This resource from Children’s Hospital of Philadelphia describes how to apply for PA medical assistance as secondary insurance.

An educational link for organizations and individuals concerned with a rare disorder. They monitor legislation, research diseases, award grants and network individuals.

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.

Create an account to join closed support groups specific to rare genetic conditions including undiagnosed.

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

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.

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.