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Archives for: July 20th, 2015

Member Spotlight: WSCTF

Written by Lisa Sencen on July 20, 2015

Worldwide Syringomyelia & Chiari Task Force’s purpose is to educate the world about Syringomyelia. The organization provides those affected, with hope by advocating research for a cure. As the organization grows, it will provide direct assistance to those diagnosed with Syringomyelia by providing durable medical equipment to all who qualify by having a letter… Read More

Member Spotlight: AGMD

Written by Lisa Sencen on July 13, 2015

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is an international, non-profit organization that functions as an information resource center for people affected by digestive motility disorders. The organization also serves as an integral resource for members of the medical community. To learn more about AGMD and digestive motility disorders,… Read More

Member Spotlight: CdLS Foundation

Written by Lisa Sencen on July 6, 2015

The Cornelia de Lange Syndrome Foundation (CDLSF) is a non-profit, family health organization. Established in 1981, the CdLS Foundation exists to ensure early and accurate diagnosis of the syndrome, and help people with CdLS and others with similar characteristics make informed decisions throughout their lifetime. To learn more about Cornelia de… Read More

Member Spotlight: AMEN Support

Written by Lisa Sencen on June 29, 2015

The American Multiple Endocrine Neoplasia Support (AMEN Support) is a voluntary organization whose mission is to provide education and support to patients, their families and medical personnel regarding multiple endocrine neoplasia (MEN) type 1, MEN type 2a, MEN type 2b. To learn about MEN and  AMEN Support, visit their website… Read More

Member Spotlight: UMDF

Written by Lisa Sencen on June 22, 2015


The UMDF Mission is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.  To learn more about UMDF, please go to:

1.)   What does it mean to you personally to be a patient organization serving the… Read More