Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)

Written by on March 15, 2017

2017 Honoree
Rare Impact Award

Christine Grube

After being diagnosed with Giant Axonal Neuropathy (GAN), a rare genetic disorder, Christine (Chrissy) Grube volunteered to be the first patient injected with an experimental treatment so that other children with GAN, including her… 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

Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)

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.®