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Research program funded by the National Institute of Health (NIH). Some patients seen in the CHOP UDP are eligible and will also be asked if they want to enroll in the research side. You can visit their website to learn more about the research they conduct. Adult patients may be seen by the UDN site at Penn.
An educational link for organizations and individuals concerned with a rare disorder. They monitor legislation, research diseases, award grants and network individuals.
This resource from Children’s Hospital of Philadelphia describes how to apply for PA medical assistance as secondary insurance.
Visit this website for details on orphan (rare) diseases and treatments. Additional information like drug development, orphan product designations, and how the FDA supports rare disease research. You can also find a list of drugs approved for rare conditions and ongoing clinical trials.
This website provides resources for families that of children with any medical diagnosis, including sibling supports, caregiver supports, age appropriate books and resources. They also outline TV shows, educational resources for providers, educators, and mental health resources
Create an account to join closed support groups specific to rare genetic conditions including undiagnosed.
Sibshops is a fun and rewarding program for brothers and sisters of children with special health or developmental needs to gain peer support and education through facilitator led discussions, activities and games.
If your teen has an eating disorder—such as anorexia, bulimia, or binge eating—you may feel helpless, worried, or uncertain about how you can best support them. That’s why you need real, proven-effective strategies you can use right away. Whether used in conjunction with treatment or on its own, this book offers an evidence-based approach you can use now to help your teen make healthy choices and stay well in body and mind.
This poignant and informative narrative relates how one mother rescued her daughter from the "experts" and treated the girl's life-threatening anorexia using a controversial approach. Known as the Maudsley Approach, this home-based, family-centered therapy, developed in Great Britain in the 1980s, has been receiving a lot of press here over the past few years.
The most effective treatment for eating disorders is family-based, where parents play an essential role. Yet most struggle to know what to do and how to do it. With a wealth of practical examples and tips that have helped many tens of thousands of relieved parents, Eva Musby guides you through each stage of your son or daughter's recovery. She provides solace and confidence, while addressing the real-life questions that parents struggle with.