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| | 9 Trisomy International Parent Support (9-TIPS) is an international support network for families of children with Trisomy 9. 9-TIPS connects families whose children have a similar Trisomy 9 diagnoses, updates parents on available medical resources, and circulates annual newsletters. | | http://www.trisomy9.org/9tips.htm |
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| | The Aarskog Syndrome Parent Support offers professionals, organizations, and Aarskog Syndrome families with information and contacts. Children can participate in the Aarskog Pen Pal Club and parents are connected with other families for mutual support. | |
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| | Aboutface is a nonprofit support and information network which provides emotional support and information to, and on behalf of, individuals who have facial differences and their families. Aboutface provides a newborn care provider package, booklets of information on specific conditions, a quarterly newsletter, hospital visits, school programs, and local chapters across North America. Information is available in English, Spanish and Portuguese. | | http://www.aboutfaceinternational.org |
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| | Acoustic Neuroma Association (ANA) provides information and support to patients who have been diagnosed with or treated for an acoustic neuroma or other benign problem affecting the cranial nerves. ANA also furnishes information on patient rehabilitation to physicians and health care personnel; promotes and supports research on acoustic neuroma and its affects; and educates the public regarding symptoms suggestive of acoustic neuroma, thus promoting early diagnoses and successful treatment. | | http://www.ANAUSA.org |
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| | Agenesis of the Corpus Callosum (ACC Network) is an organization which provides information and communication links to individuals, families and professionals. ACC Network also provides general information packets about ACC, publishes a newsletter, and sponsors an online descussion group (ACC-Listserv). The University faculty and staff associated with the ACC Network also conduct research to develop a behavioral phenotypes of individuals with ACC and other callosal disorders. | | http://www.umaine.edu/edhd/research/accnetwork.htm |
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| | The Aicardi Syndrome Foundation, Inc. (ASF) is a not-for-profit organization incorporated in August, 1991. ASF provides funds for the purchase of medical and adaptive equipment for affected daughters, publication and distribution of the Aicardi Syndrome Newsletter, and contributes to ongoing research into the causes of Aicardi syndrome. The foundation is funded by private donations and various fundraising efforts. Supports also include e-mail groups, newsletter, chat room, and sibling outreach program. | | http://www.aicardisyndrome.org |
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| | The American Behcet's Disease Association works towards the following goals: (1) locating people with Behcet's Disease and providing them and their families with information and support; (2) providing current and pertinent education information to the medical community; and (3) to aid in diagnosing and treating Behcet's Disease. Through education, support, research and fundraising, the ABDA is working to find a cure and to promote awareness and understanding of Behcet's Disease. The American Behcet's Disease Association also helps in decreasing isolation and stress from the lives of people with Behcet's Disease and their family members. | | http://www.behcets.com |
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| | The American Pseudo-Obstruction and Hirschsprung's Disease Society (APHS) is an international support organization that promotes public awareness of gastrointestinal motility disorders and Hirschsprung's disease. It provides education and support to families of children who have been diagnosed with these disorders through parent-parent contact, publications, and annual educational symposiums. | |
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| | ASAP (American Syringomyelia Alliance Project) is a nonprofit organization that works to increase public awareness of Syringomyelia, Chiari Malformations and related disorders. ASAP supports research efforts, raises funds to develop new treatments and to improve existing treatments, and coordinates efforts of related organizations. | | http://www.asap.org |
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| The ALS Association helps research to find a cure and treat ALS, as well as providing care and support to families and individuals with ALS. They also advocate for those affected by this disease. | | http://www.alsa.org |
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