>
  

  Patient 
  Advocacy 
  Council

The Friends of NIDCR Patient Advocacy Council is comprised of non-profit organizations who work together to 1) support oral health research and NIDCR and 2) transfer oral health research from bench to bedside. 

At the end of the day, research is conducted to improve the health and lives of others. Below are quotes, stories, photos and videos that demonstrate the impact the Patient Advocacy Council has on the lives of many.

The FNIDCR PAC is co-chaired by Kathy Hammitt and Mary Fete.

View all the current members of the Patient Advocacy Council.

View all past Patient Advocacy Council Spotlight profiles.

  


Fibrous Dysplasia Foundation

    www.facebook.com/fibrousdysplasia
  @FDysplasia
  FDysplasia Youtube Channel

The Fibrous Dysplasia Foundation is a community-led nonprofit that fights back against fibrous dysplasia, McCune-Albright syndrome (FD/MAS), and related rare bone diseases. FDF serves people affected by FD/MAS through programs of research, education, and advocacy. 

Fibrous dysplasia (FD) is a rare bone disease that causes weak bones, pain, and deformity in one or several bones of the body. McCune-Albright syndrome is the combination of FD, abnormal hormone levels, intramuscular myxomas and/or cafe-au-lait birthmarks. Both FD and MAS, or FD/MAS, are caused by the same genetic mutation. Symptoms range from mild to severe, and people living with FD/MAS can live full and prosperous lives. There is no cure however, and there are no treatments to stop or slow a major symptom of the disease, the growth of malformed bones. These malformed bones cause chronic pain, weak bones that are easy to fracture, and differently-shaped bodies. For more information, read the About FD page or visit the FD Foundation library of research articles published about FD.

Visit the Fibrous Dysplasia Foundation Video/Podcast Library to view past conference presentations.



PAC_image



PAC_image3