The FSH Society has a long history of partnering with biotech and pharmaceutical companies to facilitate recruitment of patients and families for focus groups, provide patient input to clinical outcome measures, and participation in clinical trials. The Society also assists companies by providing connections, insights and scientific information in the research, therapeutic and clinical areas. For the ongoing trial of ACE-083, the FSH Society has worked with the drug’s developer, Acceleron Pharma, to better understand how FSHD affects patients through a survey (see story here) as well as to educate patients about the process of enrolling in the clinical trial. In response to the high degree of interest in the ACE-083 trial, Acceleron has worked with the FSH Society to provide the following update and FAQ. We thank Acceleron for the company’s commitment to patient education. Continue reading
- Report from the 2013 International Research Consortium meeting in Cambridge, Massachusetts. Advances in basic research, clinical trials and future drug targets.
- Introducing our new Celebrity Honorary Board. Stars from film, TV, music and sports sign on to help raise awareness.
- University of Massachusetts Medical School opens new FSHD research center and clinic.
- Photos and stories from the Celebrity Walk ‘n’ Roll, New York City benefit concert, fundraisers in Atlanta and golf tournaments from Toronto and Abilene.
And much more! Read or download the full 2014 Winter Watch here.