Outreach (Support Group) Member Services

Last Modified: 23 Dec 2013

FSRG has a number of resources available to families, patients, and others affected by Freeman-Sheldon (FSS) or Sheldon-Hall (SHS) syndromes. To take advantage of most resources, free membership in 
FSRG's Outreach Department is required. FSRG wants to have an involved membership and strives to provide responsive and relevant services to better help members. Very few services are limited to those participating in research. Most services are not dependent upon enrolment in research. 

To become a member of the Outreach Department, you must complete an application, consent documents, and speak with a FSRG Faculty Staff, or Student member, who will then approve your membership if they are satisfied. Required forms for joining are found on the website, under Contact Us. The membership process is jointly administered by the Ethics and Legal Department and other departments.

Support-Related Services

  • There are general information resources available authored by FSRG, including a brief description of FSS, a Question and Answer document.
  • The website also has links to outside sites of interest, and FSRG authored a revision the report on FSS distributed by the National Organisation for Rare Disorders.
  • There are also scientific resources, including a scientific review article on FSS and SHS and full bibliography available, as well. Most articles in the bibliography can be emailed on request.
  • There is a secure, member-only online forum.
    • Families, patients, and others affected are encouraged to share and reply with questions, concerns, self-help ideas, stories struggles, successes, and other relevant matters in an Online Discussion Forum.
    • FSRG faculty, staff, and students have guided discussions and participate on the Forum. 
      • ‘Boards’ are major categories under which persons place information in entries, called ‘posts’. Please consider the type of content you will have in your post before deciding on the best board to place it under. Using the boards and topics well will help people to better respond. You are also urged to be mindful of the End-User License Agreement.
  • FSRG helps individuals and families impacted by FSS network and share their experiences in many ways, not just online.
  • Family, patients, and others affected also receive the following services: 
    • emergency, 
    • diagnosis confirmation, 
    • second-opinion consultation via tele-medicine, e-medicine, or in-person visit, provided by FSRG's Physiologist-in-Chief or a FSRG Fellow; 
    • advocacy training, support, and education; and 
    • pastoral care services, provided by FSRG's Vice-Chaplains and Chaplain-in-Chief. 
  • Physician referral or provisional diagnosis is not required.

Research-Related Services

Volunteers
  • Eligibility and benefits offered to participants in research vary among different research studies; please enquire and be sure you understand the research. Some research studies involve risks.
  • Some research studies enrol health persons to compare them with persons with FSS, SHS, and other related problems.
  • Healthy persons are not routinely eligible for FSRG-services, unless they are faculty or staff members.
Benefits
Some benefits of being in research may include the following:
    • Research patients could gain new information about treatments for the syndrome.
    • They may have early access to new treatments.
    • Research patients may receive a thorough evaluation of their cardiopulmonary health. 
    • They may receive a free physiological stress test, spirometry, physical examination, and resting EKG.
    • Such evaluation and testing would be directly beneficial, outside of the research study. 
    • Any information would be made available to the physicians or surgeons of their choice and research patients, themselves.
  • Research patients could gain new information about impact of treatments on quality of life and modalities most likely to improve quality of life. 
  • Information regarding the contribution of psychopathology and physiopathology to quality of life may help patients and families to realise more effective treatments targeted to improve quality of life.
  • Other benefits may include a feeling of helping contribute to society, contributing to increased scientific knowledge, increased information about one’s own health or knowledge of resources, improvement in psychological well-being due to interacting with research staff or content of interviews / questionnaires.
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