American Partnership for Eosinophilic Disorders
The APFED is a non-profit organization for adults, children and families living with eosinophilic gastrointestinal disorders.
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Leukodystrophy Center Welcome Guide
We know how hard it is to care for a child with complex medical needs. We are here to support you and ease these difficulties any way we can. This guide was created as a resource for you and your family to navigate your care and partnership with our team at the Leukodystrophy Center.
Peanut Patch Treatment for Toddlers: Your Questions Answered
Terri Brown-Whitehorn, MD, answers questions about new clinical study proving daily use of a “peanut patch” for a year helped desensitize two-thirds of peanut-allergic toddlers.
Leukodystrophy Symposium Webinar Videos
These webinar videos from the Leukodystrophy Symposium provide up to date information on the best diagnostic and disease management practices, with an emphasis on how to provide patient and disease centered care during the COVID-19 health emergency.
International Rett Syndrome Foundation
The International Rett Syndrome Foundation (IRSF) is laser-focused on creating a world without Rett syndrome. For nearly 40 years, we have fueled life-changing advancements in research toward a cure.
Rett Syndrome Primary Care Guidelines
The Rett Syndrome Primary Care Guidelines provide suggested visit schedules by clinical area of assessment, specific concerns to look for and timelines for follow up appointments. Download today to ensure the best care for your child.
International Food Protein-Induced Enterocolitis Syndrome Association
FPIES provides education, support and advocacy for individuals with food protein-induced enterocolitis syndrome (FPIES) and their families.
Anti-inflammatory Recipes
Find anti-inflammatory recipes developed by Children’s Hospital of Philadelphia (CHOP) and Drexel University.
Aicardi-Goutières Syndrome Association Americas (AGSAA)
AGSAA provides information about Aicardi-Goutières syndrome, resources for families and physicians, support groups, research information and more.
ALD Connect
With its mission to improve health outcomes for patients with X-linked adrenoleukodystrophy, ALD Connect provides education and support information for families, research information, ways to get involved, and more.