Finding support and resources for your family can be tough, particularly when you first find your child’s diagnosis. There are plenty of websites offering information about rare diseases and some of them offer great introductions that are professionally written by physicians with personal experience treating your child’s disease. Other resources offer financial help, emotional support or the opportunity to connect with other families going through similar challenges or the same diagnosis.
If you are looking for support, patient groups are the way to go.
One of my dear friends, Willie Bagby, found invaluable resources by connecting with local and national patient groups for Alper’s Syndrome. NORD (the National Organization for Rare Disorders) has a list here, as does the Office of Rare Disease Research. Finding other families is often as easy as contacting an organization on the list or sending an email to one of the contacts listed in the group and asking a question.
Talking to other families is really important. You can find people who are further along in the diagnosis, testing and treatment process than you are. Some families may know of clinical studies, expert physicians or other resources you’ve never heard of.
Many nonprofits are dedicated to offering financial help to rare disease families. Some help with travel expenses, medical device costs or treatment expenses that insurance doesn’t cover. The Office of Rare Disease Research maintains a wonderful list of these resources and organizes them by the type of assistance they provide. It’s an excellent resource when you’re looking for grants. Click each link that interests you and take careful notes on the application requirements, deadlines and contacts.
Social networking opens the rare disease community to a bigger audience and makes it easier to connect. Many rare disease groups live on Facebook and offer great opportunities to connect with other patients. Don’t be afraid to join in their discussions! You might learn something new and make a few great friends.
Stay tuned, I’ll be posting more about how to find great rare disease resources!