Outreach (formerly Freeman-Sheldon Parent Support Group)

Last Modified: 19 May 2019

FSRG has a number of resources available to families, patients, and others affected by Freeman-Sheldon (FSS) or Sheldon-Hall (SHS) syndromes. FSRG strives to provide responsive and relevant services to better help patients and families.

• There are general information resources available authored by FSRG, including a brief description of FSS and a Question and Answer document. 
  
• There are also scientific resources available, including a full bibliography available on this website. Most articles in the bibliography can be emailed on request.
• FSRG helps individuals and families impacted by FSS network and share their experiences in many ways, not just online.

What Makes Us Different

FSRG began as a research-only organisation but quickly saw the need for a more peer-focused, support-oriented approach. In total, FSRG is a peer-led group. One of the co-founders has FSS. FSRG implemented an Outreach Department a year before any discussion of acquiring the former Freeman-Sheldon Parent Support Group (FSPSG), whose support functions were subsequently incorporated into this department. Prior to forming FSRG, the lives of everyone had already been deeply touched by FSS and so motivated their decision to become leaders in the field.