© 2019 by Gould Syndrome Foundation

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Cleveland, Ohio, U.S.A.

Tel: 1-866-766-3311

Our Mission

The Gould Syndrome Foundation  educates  the community at large on COL4A1/COL4A2 and it's sub-diagnosis'. We strive to help those affected through education and advocacy.  We are committed to providing individuals, family and friends with information and support for those affected. 

Who We Are

Family founded in 2018, Gould Syndrome Foundation (formerly COL4A1 Foundation) believes that awareness is key to identifying COL4A1/COL4A2 patients and to help with early intervention and prevention in the symptoms and side effects. 

How We Can Help

Gould Syndrome Foundation provides  articles, abstracts and family stories on those living with COL4A1/COL4A2. We have medical summaries to share with doctors, therapy modalities and tools.  Connect with other families for support and link to our resources both online and regional for grants and support. 

         *****COL4A1 and COL4A2 Patients DO NOT TAKE NSAIDS*****

-Please note on all your medical records and to all your Physicians that NSAID's should not be taken if you have COL4A1 /COL4A2. It is a small vessel disease and taking them can lead to stroke and other complications. 

FOR A FULL LIST OF NSAIDS TO AVOID, PLEASE CLICK HERE (link to come)

Welcome!

Gould Syndrome Foundation exists to provide hope and help to children and adults with the Ultra Rare Disease, Gould Syndrome; affecting COL4A1 and COL4A2 genes

We operate as a small group of committed volunteers, advocates, and researchers. We are funded fully by the generous support of loving family, friends and allies of those with this rare disease. 

Our Mission:

The Gould Syndrome Foundation provides hope and help for children and adults with Gould Syndrome, through:

Education: COL4A1/COL4A2 gene mutations description, symptoms and the sub-diagnosis. 

Advocacy: Teaching families how to advocate for their loved ones and access medical information.

Connect: Doctors and Researchers to patient global registry to bring research and medical therapeutic options to those affected.

We connect and coordinate our families with researchers and Medical Professionals to get our disease and management coordination into the medical realm. 

                                 *****COL4A1 and COL4A2 Patients DO NOT TAKE NSAIDS*****

-Please note on all your Medical Records and to all your Physicians/Pharmacists and Medical Team that NSAID's (Non Steroidal Anti-Inflammatory Drug) should not be taken if you have COL4A1 /COL4A2. It is a small vessel disease and taking them can lead to stroke, additional stroke and other complications.  FOR A FULL LIST OF NSAIDS TO AVOID, PLEASE CLICK HERE (link to come)

Updates, surveys, blogs and more to come!