Fibrous Dysplasia Foundation and NORD Launch Cutting-Edge Study of Fibrous Dysplasia/McCune-Albright Syndrome

The research study is open to participants worldwide to advance understanding and treatments for a rare disease affecting the bone, skin and endocrine organs WASHINGTON, DC–(November 03, 2016) – The Fibrous Dysplasia Foundation and the National Organization for Rare Disorders announce the launch of an ambitious study to research fibrous

Fibrous Dysplasia Foundation Interviews FD/MAS Patient Registry Project Lead

Deanna Portero, Executive Director of the Fibrous Dysplasia Foundation, sat down with Lisa Heral, FD/MAS Patient Registry Project Lead, to learn more about about patient registries, and why it’s so important that we start one for fibrous dysplasia/McCune-Albright syndrome. To read the interview, please visit the article: https://www.fibrousdysplasia.org/7-questions-and-answers-about-the-fdmas-patient-registry/    

PCORI P2P Meeting – Bridging Rare Disease Patients and Data through Novel Research Partnerships

Pictured Left to Right (Back Row):  Jacki Jackson-IU, Dr. Alison Boyce-NIH, Shauna Wagner-Parkview Health, Justin Heral-I.P.F.W., Julie Hughbanks-Parkview Health, David Burr-IU, Dr. Michael Mirro-Parkview Health, (Front Row):  Dr. Andrea Burke-NIH, Amanda Konradi-FDF, Jen Coleman-FDF, Lisa Heral-Parkview Health/FDF, Jaqui Kraska-NORD, Deanna Portero-PM, Zoe Slutzky-Patient. Meeting on September 18th, 2015 at the