Resources for Patients & Caregivers


Sign up for our mailing list

By signing up, you’ll hear about the latest information and upcoming events!

Join the Bloom Syndrome Community Facebook group

The BSA maintains a closed group on Facebook. Ask questions to the group, see profiles of others in our community, and make connections with others from around the world!

Read the Patient & Family Handbook

Written by families, for families! Let us know if there’s more information you want in here, or if you’d like it in another language.

Share the ‘Health Supervision Recommendations’ with your care team

It’s critically important to watch carefully for cancer or other complications due to Bloom syndrome.

Enroll in the Bloom Syndrome Registry

Enrolling will help researchers learn about and better understand Bloom syndrome and health outcomes.

Sign up for the Community Data Project

Participate to help us understand Bloom syndrome and how it compares to other rare diseases.

Participate in Other Research Studies

Research studies are ongoing and others are coming online!

Donate or Fundraise for the BSA

We are supported entirely by donations and grants. The BSA maintains a fundraising toolkit if you’re looking for ideas on how to support!

Volunteer with the BSA

We are a 100% volunteer-run organization! If you, your friends, or family want to get involved, we’d love to have you!