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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Freeman-Sheldon Research Group, Inc.

a/k/a: FSPSG

Address

1701 Hamill Avenue
Clarksburg, WV 26301

Phone

304-624-1436

800 Number

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TDD

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Email Address

phaberbosch@aol.com

Website

http://clinmedsurgcranio.blogspot.com/

After twenty-nine years of independent operation, The Freeman-Sheldon Parent Support Group (FSPSG) has been transferred to become part of the Freeman-Sheldon Research Group, Inc. (FSRG), an international faith-based, non-profit biomedical research group incorporated 2009. Both groups had very similar goals and objectives, which include improving the quality of life of individuals with Freeman-Sheldon and Sheldon-Hall syndromes by furthering research, advocacy, and education for families, professionals, and the wider lay community. Through its Outreach Department, FSRG will continue the work of FSPSG, including helping individuals and families impacted by FSS network and share their experiences. Through in-house initiatives and affiliations, members will also have new opportunities and increased access to clinical research studies and non-research related consultations. Other resources include: information, including a bibliography, general question and answer publication, and scientific articles; Online Discussion Forum, open to members and staff; and syndrome registry. FSRG wants to have an involved membership. The Group strives to provide responsive and relevant services to better help members and is committed to improving quality of life for persons with Freeman-Sheldon and Sheldon-Hall syndromes. 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-centered research and services. Freeman-Sheldon syndrome is a rare inherited disorder characterized by multiple contractures (i.e., restricted movement around two or more body areas) at birth (congenital), abnormalities of the head and face (craniofacial) area, defects of the hands and feet, and skeletal malformations. Craniofacial abnormalities may consist of characteristic facial features that cause the individual to appear to be whistling.

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