BORN A HERO Programs

FGFR Syndromes- Collaborative Research Network

We had our first National/International conference in 2020 for the 20 FGFR Syndromes that we support. The conference included world famous scientists in the FGFR world. The audience consisted of…

Read More

ABC Kind Program

A curriculum that encourages kids to love and celebrate differences- cultural, racial, and medical. We want to familiarize kids with a variety of differences and share the value and beauty that these brings to our society. We want all involved…

Read More

Seattle Rare Disease Fair

The Fair and Summit aim to educate, engage, and inspire our community about the importance of rare disease research, with the hopes that everyone who comes knows how they can support accelerated research in rare diseases…

Read More

NW Rare Disease Coalition

One of NORD’s (National Organization for Rare Disorders) goals is to assure that there is a Rare Disease Advisory Council (RDAC) represented at every State. Currently there are about 12 RDAC’s Nationwide. One of the NW Rare Disease Coalition Programs would be a WA RDAC. NORD advices and…

Read More

PEER Registry

We hope to have this up and running in June!

First study– We created a survey that will teach us how to differentiate what symptoms are associated with these Syndromes and which are not. We believe this will help parents know what to look out for and…

Read More


  • Mission Statement

    Our mission is to accelerate innovation and research to improve the quality of life for patients with FGFR Syndromes, including Pfeiffer Syndrome.

  • FGFR Syndromes

    What does FGFR stand for? What are the FGFR Syndromes? FGFR Craniosynostosis Syndromes Overview

Upcoming and Recent Events

Legal Disclaimer

Legal Disclaimer

The contents of this website, such as text, graphics, images, and other material contained on the website
(“Content”) are for informational purposes only and do not constitute medical advice; the Content is not intended
to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a physician
or other qualified health provider with any questions you may have regarding a medical condition. Never disregard
professional medical advice or delay in seeking it because of something you have read on this website.

In the event of a medical emergency, call a doctor or 911 immediately. This website does not recommend or endorse
any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the
Site. Reliance on any information provided by this website is solely at your own risk.

The Site and the Content are provided on an “as is” basis.

Links to educational content not created by Born a Hero are taken at your own risk. Born a Hero is not responsible
for the claims of external websites and education companies.