Beta-Spectrin 1 Sptbn1 Foundation Inc
Beta Spectrin Foundation
920518592
Cos Cob, CT 06807 United States
sptbn1.org
SPTBN1_Support
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News
It is with much excitement that we share the official launch to our SPTBN1 website! What's the mission? Why the betta fish? Recently diagnosed, what are the next steps? Find out these and many more answers here: https://t.co/yWcDUVe6MZ #sptbn1 #betaspectrin https://t.co/I06oUWvgbI (tw)
It's Rare Disease Day so in the spirit of finding community I want to ensure that everyone feels comfortable in this space - please continue to share thoughts, ideas or recommendations in order to make this group feel more relevant to your needs. #SPTBN1 #RareDiseaseDay https://t.co/dDE3yCPz6f (tw)
Poslední diskuze
Nearby
4.5
Cos Cob
About the organization
- H12 -
Learn Share Find Community We are a global community for those wanting to learn more about SPTBN1. Led by a group of parents doctors and researchers we have seen first hand the impact of hard work and dedication looks like. We look forward to supporting all of those impacted by SPTBN1 and its subsequent varients. We welcome you to the Beta Spectrin Foundation.
Fund Raising and/or Fund Distribution
