#418: Start Here

So you or someone you love has been diagnosed with Hao-Fountain Syndrome. Now what?

So you or someone you love has been diagnosed with Hao-Fountain Syndrome. Now what?

It can definitely be overwhelming. But here are some resources. And some ways to get involved.  

If you or someone in your family has just been diagnosed with Hao-Fountain Syndrome or USP7, please join our private Facebook or Discord groups. Click below and then request to join the private group. 

Facebook: https://www.facebook.com/groups/969399453182041/

Discord: discord.gg/7UFUPAFs8K

 

To get connected to Dr. Schaaf, email Bo Bigelow here:  bo.bigelow@usp7.org

To join our registry, click here to get started:  https://usp7x.acrossmatrix.com/#/user-request

To donate to our biobank, email Bo Bigelow here:  bo.bigelow@usp7.org

 

Checks to our foundation should be made out to FOUNDATION FOR USP7 RELATED DISEASES and mailed here: 

FOUNDATION FOR USP7 RELATED DISEASES
11 Innkeepers Ln
Falmouth, ME  04105