Researching FGFR Syndromes

BORN A HERO believes that a natural history study serves as a foundation of future research. It helps researchers understand the progression of the disease and serves as a guide for future research projects. We support data sharing because more research can be done if the data is available for other researchers to use. BORN A HERO has an amazing Medical Board. We have started a natural history study for Pfeiffer Syndrome and we are creating a national registry. We are also hosting an FGFR Syndromes research symposium with Seattle Children’s Research Institute, the American Society for Bone and Mineral Research, Dr. Ethylin Jabs, and Dr. Aris Economides.

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.