How do I give money to help research in Beckwith-Wiedemann syndrome?
There are a few different ways to donate money to help with research on Beckwith-Wiedemann syndrome. Donations are accepted by the Beckwith-Wiedemann Syndrome Fund at Alex's Lemonade Stand Foundation to further the research on Beckwith-Wiedemann syndrome.
Alternatively, The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them, including Beckwith-Wiedemann syndrome. Donations to NORD can be made here.
More Organizations Content
Are there good support groups for Beckwith-Widemann syndrome?
There are many support groups for Beckwith-Widemann syndrome:
- Beckwith-Widemann Children's Foundation International (BWCFI) - based out of Portland, OR, BWCFI's primary purpose is to provide educational and reference resources for families and individuals diagnosed with BWS, however they also provide "as-needed" services such as travel assistance, referrals, financial grants, and help with insurance claim denials.
- Beckwith-Wiedermann Support Group on Facebook - this is a closed group than over 1,500 people from around the world have joined.
- Beckwith-Wiedermann Support Group - Founded in 1990, this UK-based group provides information and support to families of children with BWS.