INTRODUCTION• FSRG's mission is to provide a Judeo-Christian faith-based setting (1) to improve the quality of life of individuals with Freeman-Sheldon (FSS), Sheldon-Hall syndromes (SHS), and related entities by furthering research, clinical care, advocacy, and education for families, professionals, and the wider lay community; and (2) to facilitate fellowship and professional exchange concerning the above.• FSRG’s focus is on physiology, the normal function of the body; the goal is to make the body work and the person well, through patient-driven, patient-centred research and services. FSRG is happy to receive input on concerns and problems that should be considered in research, and FSRG is eager to help individuals and families in new ways.
FAMILIES, PATIENTS, AND OTHERS AFFECTED BY FSS, SHS or OTHER RELATED PROBLEMS• FSRG has a number of resources available to families, patients, and others affected by Freeman-Sheldon FSS or SHS, who are members of FSRG's Outreach Department. FSRG wants to have an involved membership and strives to provide responsive and relevant services to better help members. To become a member of the Outreach Department, you must complete an application, and FSRG must verify that the application is legitimate and connected with a person with FSS or SHS to ensure only deserving and persons become involved. This is to protect group members' safety and security and will differ on a case-by-case basis.
Support-Related Services• There are lay information resources available authored by FSRG, including a brief lay 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.• 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. Additionally, FSRG staff will have guided discussions, and FSRG clinical and academic faculty will also 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.• 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; advocacy training, support, and education, provided by West Virginia Parent Training Institute; and pastoral care services, provided by FSRG's Vice-Chaplains and Chaplain-in-Chief. Physician referral or provisional diagnosis is not required.
Disorder Registry• Any person, living or deceased, identified by FSRG Faculty to have FSS or SHS may be included in the secure and protected disorder registry, maintained by the Ethics and Legal Department.
CHANGES TO THIS NOTICE, RIGHT TO REQUEST A HARD-COPY, AND COMPLAINTS• We may change our policies at any time. Before we make a significant change in our policies, we will change our notice and post in our facilities and on our Web site at http://fsrgroup.org/.• You can receive a copy of the current notice at any time. The effective date is listed at the end. You will be asked to acknowledge in writing your receipt of this notice. You may receive a paper copy of this Notice from us upon request, even if you have agreed to receive this notice electronically.• If you are concerned that your rights may have been violated, or you disagree with a decision we made about access to services or benefits, you may contact our Ethics and Legal Department Director listed below or through the website, if you are viewing an electronic version. Under no circumstances will you be penalised or retaliated against for filing a complaint.