Organizations: All
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1 in 9: The Long Island Breast Cancer Action Coalition
(updated on 11/24/2009)
1 in 9 is an advocacy organization that keeps the concerns about the breast cancer epidemic in the forefront. 1 in 9 also promotes action toward finding causes & cures for the eradication of breast cancer.
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11q Research and Resource Group
(updated on 11/24/2009)
To provide support and organizational efforts for parents of all children with 11th chromosome abnormalities. Through networking, cooperation with the research community, and resulting sharing of information, we will be better able to meet the challenges brought to us as parents, families and friends of 11q children.
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1p36 Deletion Support & Awareness
(updated on 06/15/2010)
Our mission is to help individuals affected by chromosome 1p36 abnormalities overcome the obstacles they face to be able to lead healthy, happy and productive lives. We do this by providing support and education to their families and increasing awareness of chromosome 1p36 abnormalities in the public and medical communities.
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22q and You Center
(updated on 11/24/2009)
At The "22q and You" Center -- established in 1996 -- our goal is to provide the finest diagnosis, treatment and follow-up services to these children and their families. We also continue to lead the way in researching 22q11.2 deletion, hoping to find out more about what causes it, how it affects children and how we can make their lives even better.
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22q Central
(updated on 03/15/2010)
22q Central is a worldwide community directory, promoting awareness and education regarding a common, yet many times overlooked, genetic disorder known as 22q11.2 Deletion Disorder, DiGeorge Syndrome, VCFS (velo-cardio-facial syndrome) and others. Parents, caregivers, and extended family of those with VCFS face difficult challenges that require practical solutions, and that is exactly what you'll find here. We hope that you'll join the many voices of experience that speak here, and that you'll share in reaching out to others with your own unique perspective. We offer you a welcoming, safe and comfortable place to interact with other parents and professionals, and an opportunity to learn, share and get involved.
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4P- Support Group
(updated on 06/18/2010)
The mission of the 4p- Support Group is to improve access to 4p- information to parents, family members and care providers of individuals who have 4p- (Wolf-Hirschhorn Syndrome is the main syndrome).
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5p- Society
(updated on 11/24/2009)
Our mission is to encourage and facilitate communication among families having child with 5p-syndrome and to spread awareness and education of the syndrome to these families and their service providers.
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A Cure for Bassen Kornzweig Foundation
(updated on 11/24/2009)
Our mission is to bring the newest treatments, tests, medications, and cures to those who suffer from genetic diseases.
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A-T Children's Project
(updated on 11/24/2009)
The A-T Childrenメs Project was formed to raise funds through events and contributions from corporations, foundations and friends. These funds are used to accelerate first-rate, international scientific research aimed at finding a cure and improving the lives of all children with ataxia-telangiectasia.
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Abetalipoproteinemia
(updated on 11/24/2009)
An online support group to help others with abetalipoproteinemia
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Abetalipoproteinemia Collaboration Foundation
(updated on 11/24/2009)
To create an international network of those diagnosed with Abetalipoproteinemia (also known as Bassen-Kornzweig disease) and related disorders, as well as their families, treating physicians, and researchers.
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About Special Kids
(updated on 04/23/2010)
We support children with special needs and their families by providing information, peer support, and education, and building partnerships with professionals and communities.
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AboutFace International
(updated on 12/02/2009)
AboutFace is an international charitable organization providing information services, emotional support and educational programs for people with facial differences and their families. We work to foster acceptance and understanding of individuals living with facial differences, so that they may contribute to society with dignity and respect.
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Acid Maltase Deficiency Association
(updated on 12/02/2009)
The Acid Maltase Deficiency Association, was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, also known as Pompe Disease.
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Acoustic Neuroma Association
(updated on 11/24/2009)
ANAUSA provides information and support for patients diagnosed with or treated for an acoustic neuroma or other benign tumor affecting the cranial nerves.
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Adenoid Cystic Carcinoma Research Foundation
(updated on 11/24/2009)
The Adenoid Cystic Carcinoma Research Foundation (ACCRF) supports research into ACC that will improve therapies and accelerate a cure for the disease.
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Advocacy for Patients with Chronic Illness, Inc.
(updated on 11/24/2009)
To provide free information, advice and advocacy services to patients with chronic illnesses, in areas including health and disability insurance, Social Security disability, employment discrimination, school-based accommodations, and resource location.
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Alagille Syndrome Alliance
(updated on 05/21/2010)
The purpose of the Alliance is to be the main networking resource and source of information for people with AGS, their families, friends, and health care providers. The Alliance is also dedicated to increasing public awareness of AGS and supporting research efforts on behalf of the AGS community.
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Alpha-1 Advocacy Alliance
(updated on 11/24/2009)
The Alpha-1 Advocacy Alliance was formed to build an educational assistance program to meet these quickly expanding needs. We have a passion to serve the under-served populace, educating and empowering them to move in a direction that improves their lives. In addition, these same individuals have much to offer each other and through extended volunteers and compassion, we encourage growth through exchange.
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Alpha-1 Association
(updated on 12/02/2009)
Improving the lives of those affected by Alpha-1 Antitrypsin Deficiency (Alpha-1), a genetic disorder than can cause liver and lung disease in children and adults.
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Alpha-1 Foundation
(updated on 12/02/2009)
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 Antitrypsin Deficiency.
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AlphaNet, Inc.
(updated on 05/26/2010)
AlphaNet has a mission. The heart of this mission is simple — to improve the lives of individuals affected by Alpha-1 Antitrypsin Deficiency. As a not-for-profit organization that is governed by, employs and serves Alphas, AlphaNet is uniquely able to develop and offer programs and services based on a very personal understanding of how Alpha-1 affects the lives of Alphas. In keeping with this mission, AlphaNet provides a wide range of specialized programs and services designed to meet the specific needs of the Alphas it serves.
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Alstrom Syndrome International
(updated on 04/18/2010)
Alstrom Syndrome International's mission 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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Alveolar Capillary Dysplasia Association
(updated on 11/24/2009)
This site is a world wide support system and database for both families and physicians to share information about ACD. We are very excited about the studies which are underway. By communicating with others we hope to be able to expand our understanding of ACD even more.
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Alzheimer's Association
(updated on 11/24/2009)
The mission of the Alzheimer's Association is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
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Alzheimer's Disease Education and Referral Center
(updated on 05/11/2010)
The mission if ADERC is to モcompile, archive, and disseminate information concerning Alzheimerメs diseaseヤ for health professionals, individuals with AD, their families and the public.
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Alzheimer's Foundation of America
(updated on 11/24/2009)
To provide optimal care and services to individuals confronting dementia, and to their caregivers and families--through member organizations dedicated to improving quality of life.
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American Association for Klinefelter Syndrome Information & Support
(updated on 11/24/2009)
The mission of the American Association for Klinefelter Syndrome Information & Support is the education, support, research and understanding of 47XXY and its variants, collectively known as Klinefelter Syndrome.
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American Association of Kidney Patients
(updated on 11/24/2009)
Our mission is to improve the lives of fellow kidney patients and their families by helping them to deal with the physical, emotional and social impact of kidney disease.
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American Association of Multilple Enchondroma Diseases
(updated on 11/24/2009)
The general objective of AAMED is to be an information source for people with Multiple Enchondromas and their families. It is also a place to get in touch with surgeons and/or physicians interested in this kind of disorders as well as other professionals who work with problems caused by Multiple Enchondromas.
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American Association on Intellectual and Developmental Disabilities
(updated on 11/24/2009)
AAIDD promotes progressive policies, sound research, effective practices and universal human rights for people with intellectual and developmental disabilities.
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American Autoimmune Related Diseases Association, Inc.
(updated on 05/12/2010)
American Autoimmune Related Diseases Association is the nation's only organization dedicated to bringing a national focus to autoimmunity as a category of disease and a major women's health issue and to promoting a collaborative research effort in order to find better treatments and a cure for all autoimmune diseases.
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American Behcet's Disease Association
(updated on 11/24/2009)
The American Behcetメs Disease Associationメs mission is to provide support and information to people with Behcetメs Disease and their families and to educate the medical community about Behcetメs Disease. Through education, support, research and fund raising, the American Behcetメs disease Association is working to find a cure and to promote awareness and understanding of Behcetメs disease.
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American Childhood Cancer Organization
(updated on 04/28/2010)
Our mission is to provide information, support, and awareness for children and adolescents with cancer and their families, to advocate for their needs, and to support research so every child survives and leads a long and healthy life.
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American College of Medical Genetics
(updated on 12/02/2009)
The ACMG provides education, resources and a voice for the medical genetics profession. To make genetic services available to and improve the health of the public, the ACMG promotes the development and implementation of methods to diagnose, treat and prevent genetic disease. To fulfill its mission, the ACMG strives to: ᄚ Advance the art and science of medical genetics by maintaining high standards in education, practice and research. ᄚ Increase access to medical genetic services and improve public health. ᄚ Advocate for and represent geneticists and providers of clinical genetic services. ᄚ Develop clinical practice guidelines. ᄚ Develop laboratory services directories, databases, population screening guidelines and position papers. ᄚ Establish uniform laboratory standards, quality assurance and proficiency testing. ᄚ Promote effective and fair health policies and provide technical assistance to government agencies, professional organizations and other medical specialties. ᄚ Sponsor educational programs for geneticists, other health care providers and the public, including the Annual Clinical Genetics Meeting.
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American Foundation for the Blind
(updated on 11/24/2009)
The American Foundation for the Blind is a national nonprofit that expands possibilities for people with vision loss.
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American Hemochromatosis Society, Inc.
(updated on 11/24/2009)
The mission of the American Hemochromatosis Society (AHS) is to educate and support the victims of HFE-associated hereditary hemochromatosis (genetic iron overload) and their families as well as educate the medical community on the latest research on Hereditary Hemochromatosis (HH). AHS' aim is to identify through genetic testing, the 43 million+ Americans who unknowingly carry the single or double gene mutations for HH which puts them at risk for loading excess iron.
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American Juvenile Arthritis Organization
(updated on 11/24/2009)
The mission of the American Juvenile Arthritis Organization is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases.
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American Lung Association
(updated on 05/17/2010)
The American Lung Association is the leading organization working to save lives, improve lung health and prevent lung disease. The American Lung Association is "Fighting for Air" through research, education and advocacy.
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American Porphyria Foundation
(updated on 12/02/2009)
The mission of the American Porphyria Foundation is to enhance awareness and education about the Porphyrias and to aid in advancing treatment of this group of disorders.
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American Self-Help Group Clearinghouse
(updated on 11/24/2009)
Our mission is to help isolated individuals and families to find & form their own mutual aid self-help groups and networks.
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American Sickle Cell Anemia Association
(updated on 05/07/2010)
ASCAA is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, couseling, and supportive services to individuals and families at-risk for sickle cell disease.
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American Sleep Apnea Association
(updated on 12/02/2009)
Our mission is to reduce injury, disability and death from sleep apnea and to enhance the lives of those affected by this common disorder.
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American Society of Human Genetics
(updated on 11/24/2009)
ASHG serves research scientists, health professionals, and the public by providing forums to, share research results at annual meetings and in The American Journal of Human Genetics, advance genetic research by advocating for research support, enhance genetics education by preparing future professionals and informing the public, and promote genetic services and support responsible social and scientific policies.
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American Syringomyelia Alliance Project, Inc.
(updated on 05/07/2010)
To improve the lives of people affected by syringomyelia, Chiari malformation and other related conditions, while we find cures.
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American Vitiligo Research Foundation
(updated on 11/24/2009)
American Vitiligo Research Foundation Inc. (AVRF) provides public awareness about vitiligo through dedicated work, education and counseling. We seek to make a difference worldwide to those afflicted by the disease, focusing on children and their families. We embrace diversity and encourage acceptance. The AVRF encourages higher ethical standards in research, and therefore supports finding a cure through alternatives to animal testing.
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AmeriFace - The AFD Network
(updated on 12/02/2009)
The mission of AmeriFace is to provide information and emotional support to individuals with facial differences and their families and increase public understanding through awareness programs and education on behalf of those we serve.
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Amyloidosis Support Groups, Inc.
(updated on 11/24/2009)
Amyloidosis Support Groups, Inc., a 501 (c) 3 non profit corporation was formed for the primary purpose of starting and maintaining Amyloidosis Support Groups throughout the United States, dedicated to providing peer group support to patients, caregivers, families and friends of those touched by this life threatening disease.
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Amyotrophic Lateral Sclerosis Association
(updated on 04/26/2010)
The mission of the ALS Association is to lead the fight to cure and treat ALS through global, cutting edge research, and to empower people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.
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Androgen Insensitivity Syndrome Support Group USA
(updated on 05/09/2010)
We are here to provide support, information and assistance to all who wish to know more about Androgen Insensitivity Syndrome (AIS) and similar conditions.