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
The MAGIC Foundation is a nonprofit that provides support to the families of children afflicted with conditions that affect growth, including FD/MAS. Like the Fibrous Dysplasia Foundation, the MAGIC Foundation provides important support to people living with FD/MAS, and is a trusted organization in the community. After supporters of the FD/MAS
“Little is known about the rare disease fibrous dysplasia and related disorders associated with excess bone growth. For patients, severe pain and deformity can occur; and, when the affected area is in the craniofacial region, they can experience migraines, blindness, and difficulty eating along with the painful social stigma of
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/
The week of December 14th, three meetings were held to fulfill a PCORI P2P grant requirement. During the meeting we provided working group members with a brief educational presentation about what clinical effectiveness research (CER) is and what types of CER PCORI typically funds. Highlights from the follow-up survey: WG
The Fibrous Dysplasia/McCune-Albright syndrome (FD/MAS) Patient Registry Working Group will attend a series of meetings held during the week of 12/14. These meetings will educate Working Group members on comparative effectiveness research (CER), and engage the many stakeholders of the Working Group to provide ideas related to the types of
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
Welcome to the working group website. We will use this page to provide updates on our upcoming patient registry!