Organizations: S

  • Save Babies Through Screening Foundation, Inc. (updated on 12/02/2009)
    The mission of the Save Babies Through Screening Foundation is to improve the lives of babies by preventing mental retardation, disabilities and death from disorders detectable through newborn screening (the routine heelstick blood specimen). Our scope is to screen all newborns for all metabolic, endocrine and hematologic disorders already detectable through existing routine newborn screening programs.
  • Scentia (updated on 01/27/2010)
  • Scleroderma Foundation (updated on 05/07/2010)
    Our three-fold mission is 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, and to stimulate and support research to improve treatment and ultimately find the cause of and cure for scleroderma and related diseases.
  • Scottish Motor Neurone Disease Association (updated on 11/24/2009)
    We want to make Scotland a place where those living with motor neurone disease/amyotrophic lateral sclerosis can expect consistent, high standards of care and where we work directly towards a cure.
  • Self Help Queensland, Inc. (updated on 11/24/2009)
    Supporting people to find their own solutions to improve well being.
  • SHARE - Pregnancy and Infant Loss Support, Inc. (updated on 11/24/2009)
    The mission of Share Pregnancy and Infant Loss Support, Inc. is to serve those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth, or in the first few months of life.
  • Share and Care Cockayne Syndrome Network, Inc. (updated on 11/24/2009)
    Helping children with Cockayne syndrome and their families improve their quality of life through support, education and research.
  • Sharsheret (updated on 12/02/2009)
    Sharsheret is a national not-for-profit organization supporting young Jewish women and families facing breast cancer.
  • Short Rib Polydactyly Syndrome Support Network (updated on 11/24/2009)
    Our mission is to build a community of families who can share experiences and information, and provide mutual support on issues related to SRPS, and to provide information that helps families better understand SRPS and keep them updated on the latest medical research.
  • Shwachman Diamond Syndrome Foundation (updated on 09/02/2010)
    Our organization's mission is to advocate and support research towards a cure and improve medical management of symptoms, educate the medical community and general public about Shwachman Diamond Syndrome, provide emotional support to patients and their families, link families through medical/family conferences to share experiences and ideas disseminate current medical information, and support an international patient registry and international medical conferences.
  • Shy-Drager/Multiple System Atrophy Support Group, Inc. (updated on 11/24/2009)
    The mission of the Shy-Drager Syndrome/Multiple System Atrophy Support Group (SDS/MSA) is to gather information from each group of people involved (Patients, Caregivers, Family Members, and Physicians) and disseminate that information to all.
  • Sibling Support Project of The Arc of the United States (updated on 11/24/2009)
    The Sibling Support Project, believing that disabilities, illness, and mental health issues affect the lives of all family members, seeks to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parentsメ and providersメ understanding of sibling issues. Our mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parentsメ and providersメ awareness of siblingsメ unique, life-long, and ever-changing concerns through workshops, websites, and written materials.
  • Sickle Cell Disease Association of America, Inc. (updated on 05/06/2010)
    Our mission is to help improve the quality of life for persons/families affected by the sickle cell syndrome and related genetic disorders.
  • Sickle Cell Disease Association, Oklahoma (updated on 11/24/2009)
    Our mission is to promote awareness of the genetics and impact of sickle cell disease and related conditions and provide leadership to promote the continuous improvement of the systems necessary to provide community, health and support services for individuals with sickle cell disease.
  • Sickle Cell Disease Foundation of California (updated on 11/24/2009)
    With a growing population of individuals with sickle cell disease and sickle cell trait, the primary focus of the SCDFC is to educate, screen and counsel those persons at risk of having children with sickle cell disease and other hemoglobin disorders.
  • Sickle Cell/Thalassemia Patients Network (updated on 10/17/2011)
    SCTPN is dedicated to improving the quality of life for individuals and their families living with sickle cell disease, thalassemia, and other hemoglobin variants by providing services that will help to reduce the negative physical, emotional, educational, social, and economic impact of debilitating hemoglobinopathies.
  • SistaMoon Foundation (updated on 09/13/2010)
    The mission of the SistaMoon Foundation is to 1. Bring awareness to Devic's Disease. 2. To help raise funds for research and support for individuals diagnosed and affected by this rare disease. 3. To advocate for Devic’s survivors who can not advocate for themselves. 4. To help educate individuals regarding this disease, by providing information from some of the leading doctors/researchers who have a vast knowledge of this disease.
  • Sjögren's Syndrome Foundation, Inc. (updated on 04/26/2010)
    The SSF 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.
  • Smith-Lemli-Opitz/RSH Foundation (updated on 01/11/2012)
    The Smith-Lemli-Opitz/RSH Foundation is a non-profit organization dedicated to supporting families, individuals and professionals dealing with Smith-Lemli-Opitz syndrome. By providing a network of ongoing communication, funding related research, and raising awareness, we are committed to enhancing the quality of life of affected individuals while improving on current treatment methods and striving towards a cure.
  • Sotos Syndrome Support Association (updated on 05/09/2010)
    The Sotos Syndrome Support Association's mission is to add to your understanding of this syndrome and the people who are affected by it.
  • Southeastern Regional Genetics Group (updated on 11/24/2009)
    The Southeastern Regional Genetics Groupル, Inc. has a mission to enhance and promote the quality of genetic services in the Southeastern Region, to provide a forum for exchange of information among professionals who provide genetic services and the consumers of these services in the southeastern region of the United States, to receive and administer funds for coordinating genetic services and for furthering education about the delivery of genetic services, to interact with other regional and national genetic organizations, and to arrange and promote proficiency testing and quality control in genetic services.
  • Spastic Paraplegia Foundation (updated on 11/24/2009)
    We are committed to discovering the cures for HSP and PLS by promoting research, providing accurate information about these disorders, and creating opportunities for mutual support and sharing.
  • Special Needs Advocate for Parents (updated on 12/02/2009)
    SNAP serves over 6,000 organizations and families in the special needs community with educational seminars on special needs estate planning, referrals, and networking opportunities as well as offering medical insurance problem-solving education and services.
  • Spectrum Health Cancer Genetics Program (updated on 05/07/2010)
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  • Spina Bifida Association (updated on 06/02/2010)
    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.
  • Spina Bifida Resource (updated on 04/21/2011)
    Spina Bifida Resource's mission is to promote the prevention of spina bifida and its secondary conditions and to enhance the health and well-being of those affected.
  • Spinal Muscular Atrophy Foundation (updated on 02/18/2010)
    The mission of the Spinal Muscular Atrophy Foundation is to accelerate the development of a treatment for SMA, the number one genetic killer of infants and toddlers.
  • Stevens Johnson Syndrome Foundation (updated on 05/08/2010)
    The SJS Foundation was founded to be a resource to SJS victims and their families. Our mission is provide support services, and compile and distribute valuable information about SJS to the public and medical professionals regarding treatments and therapies that prove beneficial to SJS sufferers. We work to promote public awareness about the signs of SJS so that a quick diagnosis can be made and the offending drug stopped as soon as possible.
  • Stickler Involved People (updated on 05/09/2010)
    The mission of Stickler Involved People (SIP), a not-for-profit organization, is to educate and give support to all those affected by Stickler syndrome.
  • Sturge-Weber Foundation (updated on 05/07/2010)
    To empower individuals with SWS, KT and PWS and their families, to support and refer those affected by SWS, KT and PWS, to act as a clearinghouse of information on SWS, KT and PWS, to educate the general public, the medical profession, and government agencies by disseminating information about SWS, KT and PWS, and to facilitate further research on SWS, KT and PWS.
  • Sudden Arrhythmia Death Syndromes Foundation (updated on 03/02/2011)
    Our mission is to save the lives of young people who are genetically predisposed to sudden death due to cardiac arrhythmias and to provide education and support to families and the medical community.
  • Support Organization for Trisomy 18, 13 & Related Disorders (updated on 11/24/2009)
    SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and related chromosomal disorders. Support is provided during prenatal diagnosis, the child's life and after the child's passing. SOFT is committed to respect a family's personal decision - in alliance with a parent / professional partnership.
  • Support Organization for Trisomy in Australia (updated on 11/24/2009)
    S.O.F.T. Australia is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and related chromosomal disorders.
  • Susan G. Komen for the Cure (updated on 12/19/2011)
    Komen for the Cure is the world's largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures.
  • Syndromes Without A Name USA (updated on 09/02/2010)
    We are an organization that advocates for children and young adults who have syndromes without a name. We offer support, advice and information on the challenges that families face when there is no diagnosis. We also advocate for changes in the medical community that will benefit undiagnosed individuals.
Combined Federal Campaign (CFC)
#80146
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008-2369
Tel: 202.966.5557 Fax: 202.966.8553
info@geneticalliance.org