This is the second in a series of blog articles detailing resources concerning rare diseases. Searching the Internet for these resources can be frustrating and it can be an emotional experience—and not in a good way.
Where we’ve had experience with any of these resources, I’ve tried to give my unbiased opinion and experiences—both good and bad.
Be The Match
Be The Match is a non-profit organization operated by the National Marrow Donor Program (NMDP) that facilitates bone marrow transplants. The Be The Match Registry is the largest such registry in the world, helping match more than 6,000 donors and patients in need a year.
Although primarily associated with the treatment of blood cancers, there are many rare diseases that also use this treatment. HLH is one of those where a BMT is potentially a life-saving treatment.
Our Experience: We became involved with Be The Match after Phoebe was diagnosed with HLH and it was determined that a BMT was necessary. The organization sent us educational information on what was involved in the matching, the donations, and the procedure itself.
The Good: Once we went public for the need for a bone marrow donor via social media, many people (our families, friends, and community) reached out to Be The Match inquiring about hosting swab events. The Be The Match representative for our area was gracious and came to our area to walk people through hosting the events. (I think our community and friends hosted and helped with many of the swab events in the Central Maryland area at that time.
The Not-So-Good: None from our perspective. It’s an outstanding organization that deserves more press and continued support, both from the federal government and private donations.