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Bardet Biedl Syndrome Family Association

Connecting families and sharing information on research, treatment, and therapies for Bardet Biedl Syndrome.

February 2014 Newsletter: A Letter from the President

Exciting things are happening in the Bardet Biedl community. In this issue of the newsletter you’ll read about our 2014 Conference from June 26-28th at a new venue with a new focus on living with BBS, exciting new research on BBS therapies, and the conversion of the association into a non-profit. You’ll also hear about the new BBS Center of Excellence at the Marshfield Clinic, new fundraising initiatives, and a BBS registry to advance research.

There’s so much going on we can only give an overview of all of these developments in the newsletter. That’s why I hope you’ll join us at the 2014 Conference, keep in touch via our website or Facebook page, and most of all, volunteer to help on one of our projects. I hope you are as encouraged and excited as I am about these developments. If you have questions about the association or about anything in the newsletter, don’t hesitate to get in touch. Looking forward to seeing you in Iowa City soon.

Download the complete newsletter in PDF form here.

Table of Contents:

Experts on the Agenda at the 2014 Conference

Why Iowa?

Fundraising for BBS Research and Outreach

Nonprofit Registration Update

Launching a BBS Registry: A Path to Treatment

Join the BBSFA Directory

CRISPR: A Huge Leap Forward for Gene Therapy

A Visit to the BBS Center of Excellence

A Letter from Dr. Haws, at the BBS Center of Excellence