AACAP – Understanding Risk and Protective Factors for Suicide
Provides a brief overview of the importance of risk and protective factors as they relate to suicide and offers guidance about how communities can best use them to decrease suicide risk.
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Showing 1 - 10 of 13 results
22q Support Groups in the United States
Find a list of support groups for chromosome 22q11.2 deletion in the United States.
22q International Support Groups
Find a list of International support groups for chromosome 22q11.2 deletion.
American College of Allergy, Asthma & Immunology
The American College of Allergy, Asthma & Immunology provides information and resources about allergies and asthma for patients and families.
International 22q11.2 Foundation Inc.
The Foundation provides medical, educational, psychosocial and local support resources for people with the 22q11.2 deletion syndrome and their families.
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