Ellie McGinn Archives - NORD (National Organization for Rare Disorders)

Ellie McGinn – 2017 Rare Impact Award Honoree

Written by on March 15, 2017

2017 Honoree
Rare Impact Award

Ellie McGinn

At only 9 years old, Ellie McGinn is driving research for a rare and fatal disease, has educated nearly 1,000 future doctors, successfully advocated for the 21st Century Cures Act,… Read More

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

Written by Jennifer Huron on November 3, 2016

Washington, D.C., November 3, 2016—The Fibrous Dysplasia Foundation and the National Organization for Rare Disorders announce the launch of an ambitious study to research fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The new study, the FD/MAS Patient Registry, creates a platform for patients… Read More

Archives for: March 15th, 2017

Ellie McGinn – 2017 Rare Impact Award Honoree

Written by on March 15, 2017

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

Written by Jennifer Huron on November 3, 2016

Alone we are rare. Together we are strong.®