How can patients and their families connect with PeDRA?
- Ask your dermatologist if s/he is involved in PeDRA, and ask for help finding research studies that may be helpful for your child, relative, or friend.
- Get involved in the organization that represents patients with your disease. Have a look at the patient advocacy organizations and their websites.
- PeDRA’s Stigma, Anxiety, and Depression in Children and Adolescents with Skin Disorders—The “Big Study” is our first to cross all PeDRA study areas. The research will assess anxiety, depression, and social functional issues in addition to stigma in children with skin diseases. This study will help us explain the burden of skin disease on children and families and the need for both support services for kids and better insurance coverage for diseases routinely called “cosmetic.”
Want to get involved?
- Share your story! How is your child affected by his or her skin disease? For example, has s/he stopped playing sports, going to sleepovers, or doing well in school? Send in a paragraph with your story to Jennifer Dawson.
- A picture is worth a thousand words. Send in photos of your child with his/her care team, and/or family members/care givers. Your photos help highlight the direct patient impact of our efforts to possible founders of the research. Send photos to Jennifer Dawson.
Learn more about PeDRA and why it is important
