FSHD SOCIETY
The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD)
FSHD SOCIETY
Founded:
1991-01-01
Status:
Active
Contact:
(781) 301-6060
Technology used in webpage:
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Investments List
| Date | Company | Article | Money raised |
|---|---|---|---|
| 2021-05-28 | miRecule | FSHD Society investment in Venture Round - miRecule | 5.7 M USD |
More informations about "FSHD Society"
About Facioscapulohumeral Muscular Dystrophy & FSHD Society
The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy.We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people …See details»
FSHD organization Support & Outreach - FSHD Society
Thirty years ago, the FSHD Society was launched on the idea that we had to do something extraordinary to discover the cause and cure for FSHD. From our humble beginnings, we have taken extraordinary measures to expand the …See details»
FSHD Society - National Organization for Rare Disorders
The FSH (facioscapulohumeral) Society, Inc. (FSHSI) is a voluntary, non-profit organization created to address issues and needs specifically related to facioscapulohumeral muscular dystrophy, commonly called FSH or FSHD. This is a rare inherited muscle disease the main effect of which is progressive weakening and loss of skeletal muscle.See details»
FSHD Societys Mission - Core Values - Focus Areas
The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have catalyzed major advancements and …See details»
Connect - FSHD Society
Stay up to date with the latest FSHD news and updates from FSHD Society. CONNECT WITH US. General Mailing Address: 75 North Main Street, Suite 1073 Randolph, MA 02368 U.S.A. Mail Donations to: FSHD Society P.O. Box …See details»
FSHD Society | Randolph, MA | Cause IQ
Dec 1, 2023 The FSHD Society's patient advocacy and education programs directly benefit patients and their families by connecting FSHD muscular dystrophy patients and families to healthcare providers, research institutions, and support groups, providing high-quality educational materials, organizing educational meetings and conferences, and creating opportunities and …See details»
Local Chapters - FSHD Society
International FSHD and Muscle Disease organizations. FSHD Europe; AFM Téléthon FSHD support group (France) Amis FSH (France) FSHD-MD Support Group UK; FSHD Italia; FSHD Spain; ... FSHD Society P.O. Box 411617 …See details»
SMCHD1 genetic variants in type 2 facioscapulohumeral ... - Nature
4 days ago The molecular diagnosis of type 1 facioscapulohumeral muscular dystrophy (FSHD1) relies on the detection of a shortened D4Z4 array at the 4q35 locus. Until recently, the diagnosis of FSHD2 relied ...See details»
FSHD Society History - Education - Outreach - Medical …
The FSHD Society raised funds that launched many areas of FSHD research. We helped to write the MD-CARE Act (2001), which led to the creation of the NIH-funded Wellstone Centers for FSHD research. The FSHD Society has …See details»
The Global FSHD Innovation Hub | FSHD Society
Nov 29, 2024 The FSHD Society is focused on patient engagement, education, support and healthcare navigation, and access to clinical trials. TRiNDS is a neuromuscular disease (NMD)-specific contract research organization with a successful track record of 30+ projects and a global network of 200+ NMD-experienced sites. TRiNDS will play a key role in site ...See details»
Building a better world - fshdsociety.org
The FSHD Society is the world’s largest research-centered patient advocacy organization focused on facioscapulohumeral muscular dystrophy (FSHD). This genetic condition affects one million people worldwide and causes lifelong, progressive muscle weakness that can result in significant pain and disability.See details»
For Patients & Families - FSHD Society
Dec 16, 2024 Stay up to date with the latest FSHD news and updates from FSHD Society. CONNECT WITH US. General Mailing Address: 75 North Main Street, Suite 1073 Randolph, MA 02368 U.S.A. Mail Donations to: FSHD Society P.O. Box 411617 Boston, MA 02241-1617 (781) 301-6060. DONATE; Donate; Join Us; Inclusivity & Equity;See details»
Meet Our Team - Board of Directors - Advisory Board - FSHD Society
The FSHD Society's dedicated staff and committed volunteers bring extraordinary knowledge, expertise, organizational skills, and a great sense of urgency to carrying out our mission. It is the coordinated effort we build with volunteers, patients, family members, healthcare professionals, research leaders, industry, and governments that will lead us to treatments by 2025 and then …See details»
FSHD Education - Patients & Families - FSHD Society
The FSHD Society is a leader in developing clear, authoritative information on fascioscapulohumeral muscular dystrophy (FSHD), from health care and medical advances to research and drug development. We are a driving force in connecting patients, families and caregivers, charitable organizations, government agencies, industry, scientific researchers, …See details»
A passion for adventure and advocacy | FSHD Society
1 day ago Stay up to date with the latest FSHD news and updates from FSHD Society. CONNECT WITH US. General Mailing Address: 75 North Main Street, Suite 1073 Randolph, MA 02368 U.S.A. Mail Donations to: FSHD Society P.O. Box 411617 Boston, MA 02241-1617 (781) 301-6060. DONATE; Donate; Join Us; Inclusivity & Equity;See details»
The FSHD Advocate - FSHD Society
Stay up to date with the latest FSHD news and updates from FSHD Society. CONNECT WITH US. General Mailing Address: 75 North Main Street, Suite 1073 Randolph, MA 02368 U.S.A. Mail Donations to: FSHD Society P.O. Box 411617 Boston, MA 02241-1617 (781) 301-6060. DONATE; Donate; Join Us; Inclusivity & Equity;See details»
FSHD Navigator - FSHD Society
Dec 23, 2024 FSHD Navigtor is a new program assisting individuals living with FSHD, their families, friends, and care partners. The Navigator program provides a personal, human-centered approach to help folks understand facioscapulohumeral muscular dystrophy, current research and treatments, clinical developments, access to care, and etc.See details»
XPRIZE for FSHD research | FSHD Society
Nov 16, 2024 SOLVE FSHD, a venture philanthropic organization established to catalyze innovation in Facioscapulohumeral muscular dystrophy (FSHD) research, is partnering with the nonprofit organization XPRIZE Foundation to host a global competition to remove barriers and accelerate development of novel therapies for FSHD.. XPRIZE Healthspan is a 7-year global …See details»
When I finally discovered the benefits of support groups - FSHD …
Nov 6, 2023 When SCBC merged with a larger blindness organization, my role changed. I took a course on how to conduct support groups and realized that they’re much more than just a group of people gathering to cry on one another’s shoulders. ... Eventually, I started participating in the FSHD Society’s monthly online wellness group. At first, my ...See details»
Current Trials and Studies - FSHD Society
Before a potential treatment can get to FSHD patients, it has to go through a clinical trial, a scientific experiment. ... This international organization for neuromuscular disease maintains a network of FSHD registries. ... FSHD Society P.O. Box 411617 Boston, MA 02241-1617 (781) 301-6060. DONATE; Donate; Join Us; Inclusivity & Equity;See details»