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AboutFace USA
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www.aboutfaceusa.org
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| AboutFace USA is a non-profit organization dedicated to providing information, emotional support, and educational programs to individuals who have a facial disfigurement, and to their families. |
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Alpha-1 Foundation
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www.alphaone.org
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| The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection and a cure for Alpha-1 Anititrypsin Deficiency (Alpha-1). Alpha -1 is a genetic disorder that can cause liver and lung disease in children and adults.
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Alstrom Syndrome International
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www.jax.org/alstrom
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| This mission of Alstrom Syndrome International is to provide support, information, and coordination world-wide to families and professionals in order to treat and cure Alstrom Syndrome. |
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Alzheimer's Association, Inc.
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www.alz.org
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| The mission of the Alzheimer's Association is to eliminate Alzheimer's disease through the advancement of research and to enhance quality care and support for individuals, their families and care partners.
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American Autoimmune Related Diseases Association
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www.aarda.org
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| The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.
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American Brain Tumor Association
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www.abta.org
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| The American Brain Tumor Association exists to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families. |
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American Cancer Society
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www.cancer.org
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| The American Cancer Society is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and dimishing suffering from cancer, through research, education, advocacy, and service.
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American Diabetes Association
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www.diabetes.org
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| The American Diabetes Association is the nation's leading nonprofit health organization providing diabetes research, information and advocacy. The mission of the Association is to prevent and cure diabetes and to improve the lives of all people affected by diabetes.
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American Foundation of Urologic Disease
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www.afud.org
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| The mission of the American Foundation of Urologic Disease is the prevention and cure of urologic diseases through the expansion of research, education, and patient advocacy.
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American Health Information Management
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www.myPHR.com
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| A guide to understanding and managing your personal health information.
This Web site is provided as a free public service by the American Health Information Management Association (AHIMA). The AHIMA is a national non-profit professional association dedicated to the effective management of personal health information needed to deliver quality healthcare to the public.
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American Heart Association
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www.americanheart.org
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| The American Heart Association is a national voluntary health agency whose mission is to reduce disability and death from cardiovascular diseases and stroke
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American Kidney Fund
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www.kidneyfund.org
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| The American Kidney Fund is the nation's leading voluntary health organization serving people with and at risk for kidney disease through direct financial assistance, comprehensive education, clinical research, and community serive programs.
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American Liver Foundation
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www.liverfoundation.org
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| The American Liver Foundation (ALF) is a national, nonprofit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education, and advocacy on behalf of those at risk of or affected by liver disease.
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American Lung Association
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www.lungusa.org
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| The American Lung Association fights lung disease in all its forms, with special emphasis on asthma, tobacco control and environmental health.
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American Skin Association
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www.americanskin.org
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| The American Skin Association (ASA) is a volunteer-led health organization dedicated - through research, education and advocacy - to saving lives and alleviating human suffering caused by the full spectrum of skin disorders. |
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American Tinnitus Association
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www.ata.org
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| The American Tinnitus Association (ATA) is the national champion of tinnitus awareness, prevention, and treatment. |
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Arthritis Foundation
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www.arthritis.org
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| The mission of the Arthritis Foundation is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases.
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Asthma and Allergy Foundation of America
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www.aafa.org
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| The Asthma and Allergy Foundation of America (AAFA) is the premier patient organization dedicated to improving the quality of life for people with asthma and allergies and their caregivers, through education, advocacy and research. |
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Attention Deficit Disorder Resources
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www.addresources.org
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| The website of ADD Resources has over 100 articles written by national ADHD authorities as well as adults with ADHD. Plenty of information for parents too. 100 plus links to ADHD-related websites. Includes the National ADHD Directory with over 1000 ADHD Service Providers listed as well as a National ADHD Events Calendar. Free monthly eNews available.
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Autism Society of America
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www.autism-society.org
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| Autism Society of America (ASA) is the leading voice and resource of the entire autism community in education, advocacy, services, research and support. The ASA is committed to meaningful participation and self-determination in all aspects of life for individuals on the autism spectrum and their families. |
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BCCNS Life Support Network
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www.bccns.org
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| The BCCNS Life Support Network supports people and families affected by Basal Cell Carcinoma Syndrome (a.k.a. Gorlin Syndrome) through education, referrals, support and research. |
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Brain Injury Association of America
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www.biausa.org
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| The Brain Injury Association of America's mission is to create a better future through brain injury prevention, research, education, and advocacy. |
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Celiac Sprue Association/USA
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www.csaceliacs.org
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| As a member-based, non-profit organization, Celiac Sprue Association (CSA) is dedicated to helping individuals with celiac disease and dermatitis herpetiformis and their families worldwide through education, information and research.
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Center for Professional Well-Being
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www.CPWB.org
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| The Center for Professional Well-Being conducts crisis-intervention assessments and on-site visits for individual professionals or their organizations to reduce distress and promote personal and professional well-being. The majority of services have been for physicians. Presentations are preventively oriented to promote practice harmony and reduce practice or merger distress.
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CHADD: Children and Adults with Attention-Deficit/Hyperactivity Disorder
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www.chadd.org
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| CHADD works to improve the lives of people affected by AD/HD through collaborative leadership,
advocacy, research, education, and support.
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Chromosome Deletion Outreach, Inc.
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www.chromodisorder.org
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| Chromosome Deletion Outreach's mission is to provide support to parents of children born with rare chromosome disorders, gather and disseminate information and promote research and a positive community understanding of these disorders.
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cleftAdvocate, a program of AboutFace USA
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www.cleftadvocate.org
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| The mission of Cleft Advocate is to educate, inspire and empower families whose lives are touched by cleft lip and palate or other craniofacial anomalies. |
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CNSV-network
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www.cnsv.net
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| CNSV-network is a patient-centered, non-commercial, volunteer-run Web site and Internet-based support service for people with Central Nervous System Vasculitis, their families and the health care community.
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Cornelia de Lange Syndrome Foundation, Inc.
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www.cdlsusa.org
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| The Cornelia de Lange Syndrome Foundation is a family support organization which exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime.
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Cutaneous Lymphoma Foundation
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www.clfoundation.org
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| The Cutaneous Lymphoma Foundation is an independent, non-profit patient advocacy organization dedicated to supporting people with cutaneous lymphomas by promoting awareness and education, advancing patient care, and facilitating research. |
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DebRA of America, Inc.
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www.debra.org
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| DebRA is dedicated to finding a cure for Dystrophic Epidermolysis Bullosa (EB), which affects 1 out of every 50,000 live births in the United States today. |
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Easter Seals
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www.easterseals.com
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| Easter Seals has been helping individuals with disabilities and special needs, and their families, live better lives for more than 80 years.
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Ehlers-Danlos National Foundation
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www.ednf.org
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| Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos Syndrome. |
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Epilepsy Foundation
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www.epilepsyfoundation.org
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| The Epilepsy Foundation will ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through research, education, advocacy and services.
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Families of Spinal Muscular Atrophy
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www.fsma.org
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| Families of Spinal Muscular Atrophy is the largest international organization dedicated solely to eradicating spinal muscular atrophy (SMA) by promoting and supporting research; helping families cope with SMA through informational programs and support; and educating the public and professional community about SMA.
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Fibromyalgia Network
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www.fmnetnews.com/
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| Our mission is simple: we aim to educate and assist patients with ad-free, patient-focused information that they can put to use today. We strive to make each issue of the Fibromyalgia Network Journal as accurate as possible, basing articles on published scientific findings, with many of them reviewed and edited by the experts for accuracy.
Fibromyalgia Network is an organization that attends medical conferences, interviews the experts, and sifts through the details in the medical journals for our members—so that we can deliver up-to-date objective reporting and information that you won't find anywhere else. Our major goals for enriching the lives of fibromyalgia and chronic fatigue patients include providing education, improving awareness of syndromes through May 12 activities and dissemination of our brochures, and promoting research (e.g., in-kind services to AFSA). |
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Hidradenitis Suppurativa Foundation, Inc.
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www.hs-foundation.org
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| The Hidradenitis Suppurativa Foundation, Inc. (HSF) is a nonprofit public benefit corporation dedicated to improving the quality of life and quality of care for individuals and families affected by Hidradenitis Suppurativa (HS). The HSF fosters and encourages worldwide research by developing and supporting an interdisciplinary family of scientists and physicians devoted to studying the molecular and cellular basis of HS, in order to develop and deliver more effective forms of treatment and preventative measures for those with this common, debilitating, and eminently chronic disease. |
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Huntington's Disease Society of America
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www.hdsa.org
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| The Huntington's Disease Society of America (HDSA) is dedicated to finding a cure for Huntington's Disease (HD) while providing support and services for those living with HD and their families. |
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IDEAS: IsoDicentric 15 Exchange, Advocacy & Support
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www.idic15.org
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| IDEAS is a non profit organization providing information, education, and support to families affected by isodicentric and interstitial duplications of chromosome 15; and promoting research and understanding of this rare genetic disorder. |
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International Cesarean Awareness Network
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www.ican-online.org
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| The International Cesarean Awareness Network, Inc.'s mission is to improve maternal-child health by preventing unnecessary cesareans through education, providing support for cesarean recovery, and promoting Vaginal Birth After Cesarean. |
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International Mosaic Down Syndrome Association
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www.imdsa.com
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| International Mosaic Down Syndrome Association is designed to provide emotional support, information and research to those touched by mosaic Down syndrome. |
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International Pemphigus Foundation
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www.pemphigus.org
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| The International Pemphigus Foundation is dedicated to providing information and support to the community of people living with the rare autoimmune skin diseases pemphigus and pemphigoid, including the family members, friends and medical professionals who care about and care for them.
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International Rett Syndrome Association
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www.rettsyndrome.org
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| The mission of the International Rett Syndrome Association (IRSA) is to support and stimulate biomedical research that will determine the cause and find treatments and cures for Rett syndrome, to increase public awareness of Rett syndrome, and to provide informational and emotional support to families of children with Rett syndrome. |
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Interstitial Cystitis Association
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www.ichelp.com
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| Founded in 1984, the Interstitial Cystitis Association (ICA) is a not-for-profit health organization dedicated to providing patient and physician educational information and programs, patient support, public awareness and, most importantly, research funding. |
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Kidney Cancer Association
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www.curekidneycancer.org
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| The Kidney Cancer Association is a membership organization made up of patients, family members, physicians, researchers, and other health professionals. |
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Lance Armstrong Foundation
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www.laf.org
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| The Lance Armstrong Foundation (LAF) believes that in the battle with cancer, knowledge is power and attitude is everything. Founded in 1997 by cancer survivor and cycling champion Lance Armstrong, the LAF provides the practical information and tools people living with cancer need to live strong. |
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Lupus Foundation of America, Inc.
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www.lupus.org
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| With more than 200 chapters, branches and support groups in 30 states, the Lupus Foundation of America (LFA) is the nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus. Their mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure. |
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Marinesco-Sjogren Syndrome
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www.marinesco-sjogren.org
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| The purpose of this website is to provide information and support to families affected by Marinesco-Sjogren Syndrome and to encourage communication between doctors and researchers interested in this disorder. |
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Mesothelioma Guide
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www.mesotheliomaguide.co
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| MesotheliomaGuide.co, a site that aims to provide information on actively recruiting clinical trials for veterans suffering with malignant mesothelioma. |
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Myasthenia Gravis Foundation of America, Inc.
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www.myasthenia.org
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| The Mission of the Foundation is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and closely related disorders and to improve their lives through programs of patient services, public information, medical research, professional education, advocacy and patient care. |
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National Alliance on Mental Illness
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www.nami.org
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| The National Alliance on Mental Illness is the nation’s largest grassroots mental health organization dedicated to improving the lives of persons living with serious mental illness and their families.
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National Alopecia Areata Foundation
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www.alopeciaareata.com
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| The mission of the National Alopecia Areata Foundation (NAAF) is to support research to find a cure or acceptable treatment for alopecia areata, to support those with the disease, and to educate the public about alopecia areata. |
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National Aphasia Association
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www.aphasia.org
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| The National Aphasia Association (NAA) is a nonprofit organization that promotes public education, research, rehabilitation and support services to assist people with aphasia and their families. |
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National Breast Cancer Awareness Month
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| For more than two decades, the National Breast Cancer Awareness Month (NBCAM) has educated women about breast cancer, especially the importance of detecting the disease in its earliest stages through screening mammography, clinical breast examination, and for women 20 years of age and older, breast self-examination.
The NBCAM hopes that visitors to this site will join them in October and all year as they reach out to all women throughout the United States with the important messages about early detection and the value of early treatment if breast cancer is detected. |
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National Down Syndrome Society
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www.ndss.org
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| The mission of the National Down Syndrome Society is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy. |
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National Eczema Association
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www.nationaleczema.org
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| The National Eczema Association for Science and Education (NEASE) works to improve the health and the quality of life of all persons living with atopic dermatitis/eczema, providing emotional support, information, and resources to those who have the disease as well as their loved ones, while raising public awareness of the disease. |
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National Foundation for Ectodermal Dysplasias
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www.nfed.org
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| The NFED seeks to enrich the lives of individuals affected by all forms of the ectodermal dysplasia syndromes through eduction, support, services and research. |
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National Hemophilia Foundation
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www.hemophilia.org
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| The mission of the National Hemophilia Foundation is education, research and advocacy on behalf of people with bleeding disorders. |
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National Hospice and Palliative Care Organization
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http://www.nhpco.org/templates/1/homepage.cfm
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National Kidney Foundation
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www.kidney.org
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| The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. |
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National Marfan Foundation
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www.marfan.org
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| The National Marfan Foundation is dedicated to saving lives, and improving the quality of life for individuals and families affected by the Marfan syndrome and related disorders. |
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National Marrow Donor Program
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www.marrow.org
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| The National Marrow Donor Program (NMDP) helps people who need a life-saving marrow or blood cell transplant. They connect patients, doctors, donors and researchers to resources they need to help more people live longer, healthier lives |
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National Mental Health Association
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www.nmha.org
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| The National Mental Health Association is dedicated to promoting mental health, preventing mental disorders and achieving victory over mental illness through advocacy, education, research and service. |
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National Multiple Sclerosis Society
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www.nmss.org
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| The mission of the National Multiple Sclerosis Society is to end the devastating effects of MS. |
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National Osteoporosis Foundation
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www.nof.org
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| The National Osteoporosis Foundation's mission is to prevent osteoporosis, to promote lifelong bone health, to help improve the lives of those affected by osteoporosis and related fractures, and to find a cure.
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National Ovarian Cancer Coalition
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www.ovarian.org
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| This mission of the National Ovarian Cancer Coalition is to raise awareness and promote education about ovarian cancer. The Coalition is committed to improving the survival rate and quality of life for women with ovarian cancer.
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National Pediculosis Association, Inc.
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www.headlice.org
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| The National Pediculosis Association®, Inc. (NPA) is the only non-profit health and education agency dedicated to protecting children from the misuse and abuse of potentially harmful lice and scabies pesticidal treatments. As part of its mission, the NPA works to encourage our nation's health and child care professionals to adopt standardized head lice management programs in an effort to keep the children in school lice and nit free. |
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National Psoriasis Foundation
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www.psoriasis.org
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| The mission of the National Psoriasis Foundation is to improve the quality of life of people who have psoriasis and psoriatic arthritis. Through education and advocacy, they promote awareness and understanding, ensure access to treatment and support research that will lead to effective management and, ultimately, a cure.
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National Sleep Foundation
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www.sleepfoundation.org
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| The National Sleep Foundation (NSF) is an independent nonprofit organization dedicated to improving public health and safety by achieving understanding of sleep and sleep disorders, and by supporting education, sleep-related research, and advocacy. |
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National Tay-Sachs & Allied Diseases Association
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www.ntsad.org
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| The National Tay-Sachs & Allied Diseases Association (NTSAD) is dedicated to the treatment and prevention of Tay-Sachs, Canavan, and related diseases, and to provide information and support services to individuals and families affected by these diseases, as well as the public at large. |
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Osteogenesis Imperfecta Foundation
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www.oif.org
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| The Osteogenesis Imperfecta Foundation's mission is to improve the quality of life for individuals affected by OI through research to find treatments and a cure, education, awareness, and mutual support. |
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Pachyonychia Congenita Project
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www.pachyonychia.org
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| The mission of the Pachyonychia Congenita Project (PC Project) is to find a cure for Pachyonychia Congenita.
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Pancreatic Cancer Action Network
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www.pancan.org
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| The Pancreatic Cancer Action Network, Inc. (PanCAN), established in 1999, is the first national patient advocacy organization for the pancreatic cancer community. PanCAN works to focus national attention on the need to find a cure for pancreatic cancer. |
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Parent Project Muscular Dystrophy
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www.parentprojectmd.org
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| Parent Project Muscular Dystrophy's mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne and Becker Muscular Dystrophy through research, advocacy, education and compassion. |
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Polycystic Ovarian Syndrome Association
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www.pcosupport.org
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| The Polycystic Ovarian Syndrome Association exists to provide comprehensive information, support, and advocacy for women and girls with the condition known as polycystic ovary syndrome. |
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Prevent Blindness America
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www.preventblindness.org
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| Founded in 1908, Prevent Blindness America is the nation's leading volunteer eye health and safety organization dedicated to fighting blindness and saving sight. |
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PXE International, Inc.
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www.pxe.org
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| It is the mission of PXE International to initiate, fund and conduct research; provide support for individuals and families affected by pseudoxanthoma elasticum; and provide resources for healthcare professionals. |
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RESOLVE: The National Infertility Association
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www.resolve.org
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| The mission of RESOLVE is to provide timely, compassionate support and information to people who are experiencing infertility and to increase awareness of infertility issues through public education and advocacy. |
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Restless Legs Syndrome Foundation
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www.rls.org
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| The Restless Legs Syndrome Foundation is a nonprofit 501 (c)(3) agency that is dedicated to improving the lives of men, women, and children who live with this often devastating disease. The organization's goals are to increase awareness of Restless Legs Syndrome (RLS), to improve treatments, and, through research, to find a cure.
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Scleroderma Foundation
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www.scleroderma.org
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| The Scleroderma Foundation's mission is three-fold: To help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals, and educational information; to promote public awareness and education through patient and health professional seminars, literature, and publicity campaigns; to stimulate and support research to improve treatment and ultimately find the cause of and cure for scleroderma and related diseases.
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Sickle Cell Disease Association of America, Inc.
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www.sicklecelldisease.org
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| The Mission of the Sickle Cell Disease Association of America is to promote finding a universal cure for sickle cell disease while improving the quality of life for individuals and families where sickle cell related conditions exists.
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Spina Bifida Association of America
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www.sbaa.org
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| The mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected.
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The ALS Association
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www.alsa.org
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| The mission of the ALS Association is to find a cure for and improve living with ALS.
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The International Pemphigus Foundation
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www.pemphigus.org
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| The International Pemphigus Foundation is a non-profit, tax-exempt organization whose mission is to increase awareness of pemphigus/pemphigoid, both among the general public and the medical community; to provide emotional support to patients living with these diseases, their families and friends; and to advocate research into causes, diagnoses, treatments and cure.
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The Jesse Cause - Saving Babies from Group B Strep
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www.thejessecause.org
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| The Mission of The Jesse Cause is to promote Group B Strep Awareness. |
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The LAM Foundation
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lam.uc.edu
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| The LAM Foundation provides support, education, and hope to women with Lymphangioleiomyomatosis (LAM), a progressive, debilitating lung disease. |
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The Leukemia & Lymphoma Society
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www.leukemia.org
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| The Leukemia & Lymphoma Society is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The Society's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. |
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The Myositis Association
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www.myositis.org
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| The mission of The Myositis Association is to find a cure for inflammatory and other related myopathies, while serving those affected by these diseases. |
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The Paget Foundation
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www.paget.org
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| The Paget Foundation is a national voluntary health agency whose mission is to provide information on Paget's disease and other bone disorders and the effects of certain cancers on the skeleton to patients, family members and health professionals.
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The Sjögren's Syndrome Foundation
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www.sjogrens.org
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| The Sjögren's Syndrome Foundation provides patients practical information and coping strategies that minimize the effects of Sjögren's syndrome. In addition, the Foundation is the clearinghouse for medical information and is the recognized national advocate for Sjögren's syndrome.
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The Sturge-Weber Foundation
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www.sturge-weber.com
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| The Sturge-Weber Foundation’s mission is to improve the quality of life for individuals with Port Wine Stains (PWS), Sturge-Weber Syndrome (SWS) and Klippel-Trenaunay Syndrome (KT). |
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The TMJ Assoication
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www.tmj.org
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| The TMJ Association is a national, non-profit organization whose mission is to improve the diagnosis, care and treatment of everyone affected by TMJ diseases and disorders through fostering research, education and other activities with the ultimate goal of preventing TMJ problems. |
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Tourette Syndrome Association, Inc.
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www.tsa-usa.org
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| The Tourette Syndrome Association's mission is to identify the cause of, find the cure for and control the effects of Tourette Syndrome. |
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Trisomy 18 Support Foundation, Inc.
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www.trisomy18support.org
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| The Trisomy 18 Support Foundation's mission is to guide the search for a cure and treatments, to educate and support medical professionals, and to create a caring worldwide community for affected families.
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Vitiligo Support International
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www.vitiligosupport.org
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| Vitiligo Support promotes awareness and education about vitiligo, provides information and interaction to people living with vitiligo, advocates on behalf of vitiligo patients, and strives to encourage and support medical research to find better treatments and a cure for vitiligo. |
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Women's Cancer Network (Gynecologic Cancer Foundation)
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www.wcn.org
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| Started by the Gynecolgoic Cancer Foundation, the mission of the Women's Cancer Network is to keep women informed and to enable them to be their own health advocates. |
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Xeroderma Pigmentosum Skin Cancer Foundation
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www.xpfoundation.org
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| The XP Foundation's mission is to find a cure for X.P. and develop treatment improvements; develop products to provide protection and add comfort and quality to the daily lives of X.P. patients; and
to educate the public, policy makers and researchers on the disease and progress made in reaching a cure.
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Xeroderma Pigmentosum Society
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www.xps.org
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| The mission of XPS is to increase public awareness through education about xeroderma pigmentosum and related conditions; provide protection, through support and information exchange, to victims of this disease and their families; and to promote medical research to achieve a cure for XP.
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Y-ME National Breast Cancer Organization
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www.y-me.org
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| The mission of Y-ME National Breast Cancer Organization is to ensure, through information, empowerment and peer support, that no one faces breast cancer alone.
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