Resources for Patients & Caregivers

Checklist

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!