Keep Kids Safe this Summer!
Summer provides more opportunities for kids to be active and enjoy the outdoors. Unfortunately, it also means more injuries.
Caring for your child
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Undiagnosed Diseases Network (UDN)
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.
National Organization for Rare Disorders (NORD)
An educational link for organizations and individuals concerned with a rare disorder. They monitor legislation, research diseases, award grants and network individuals.
Applying for Pennsylvania Medical Assistance (PAMA)
This resource from Children’s Hospital of Philadelphia describes how to apply for PA medical assistance as secondary insurance.
Orphan Disease Program
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.
Ryan’s Case for Smiles CopingSpace
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
RareShare
Create an account to join closed support groups specific to rare genetic conditions including undiagnosed.
Seasonal Allergies: Keeping Symptoms in Check
Signs your child may have seasonal allergies, tips to minimize exposure to allergy triggers, and how to keep your child comfortable during allergy season.
The Benefits of Outdoor Play: Why It Matters
Outdoor play is beneficial for kids beyond the physical activity it provides. Get some tips on where to go and what to do with your kids this summer.
Travel Resources for HI Patients
Learn about medical travel assistance for your child and see what’s required.