Resources

HLH Links

Histiocytosis Association www.histio.org The Histiocytosis Association of America is the only organization solely devoted to providing emotional support and education to families and patients dealing with histiocytic disorders. They also help fund research striving to gain better understanding, treatments, and ultimately a cute for Histiocytosis. Cincinnati Children's Hospital Immune Deficiency and Histiocytosis Clinic Dr. Lisa Filipovich of Cincinnati Children's Hospital is the world-renowned HLH expert. Her immune deficiency and Histiocytosis clinic sees more HLH cases each year than any other hospital in the world. Additionally they are one of the largest bone marrow transplant programs in the United States. HLH Family (Angels and Survivors) Support Group This is an online support group for patients, families, and friends that have battled HLH. It is a wonderful, encouraging community of people who understand the difficulties that someone faces through their journey with HLH. Matthew and Andrew Akin Foundation www.matthewandandrew.org This foundation was created by the Kristin and Justin Akin, a St. Louis family who lost two children to HLH. They are on a mission to provide resources for families battling HLH, promote funding for research, and raise awareness about the importance of bone marrow donation. National Marrow Donor Program www.marrow.org The National Marrow Program is a nonprofit organization that runs the Be the Match Foundation. 70% of bone marrow transplant patients do not have a match within their family, and rely on another person to donate bone marrow. This organization helps patients find a matching donor, saving many lives.

Mitochondrial Disease Links

The United Mitochondrial Disease Foundation (UMDF) www.umdf.org UMDF promotes research and education regarding diagnosis, treatment, and a cure for mitochondrial disease. They provide support and information for patients and their families. UMDF is considered the premier foundation dedicated to mito. MitoAction www.mitoaction.org MitoAction works to build a community of support for all people affected by mito, providing information and raising awareness regarding this disease.

RSD Links

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) www.rsdsa.org RSDSA is devoted to raising awareness and funds for the research of RSD. They provide education and support for those affected by RSD. RSDHope www.rsdhope.org RSDHope is a nonprofit organization that was originally founded by chronic pain sufferers. They raise awareness and funds for this debilitating disease. Hope for Jessica www.hopeforjessica.blogspot.com The blog of Jessica Stephens, an RSD patient who found miraculous relief through multiple ketamine comas.

Digestive Tract Paralysis (DTP) Links

G-PACT: Gastroparesis Patient Association for Cures and Treatments www.g-pact.org G-PACT serves as an excellent resource for DTP patients, providing information about the management of gastroparesis and Chronic Intestinal Pseudo-Obstruction. G-PACT also hosts multiple online support groups, creating a community for DTP sufferers. The Oley Foundation www.oley.org The Oley Foundation provides education and support for people requiring TPN or tube feeds.

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