Ehlers-Danlos Society

The Ehlers-Danlos Society Receives $6.7 Million from the Mike and Sofia Segal Foundation to Advance Cutting-Edge Research for Ehlers-Danlos Syndrome

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星期三, 十二月 20, 2023
Leukemia, Ehlers-Danlos Society, Quality of life, Partnership, Chronic myelomonocytic leukemia, Rupture, Research, Bone marrow, Pain, Blood, Tissue, CMML, Cardiovascular disease, EDS, Society, Subluxation, Ehlers–Danlos syndromes, Joint, Dislocation, HSD, Bruise, Diagnosis, Injury, Child

NEW YORK, Dec. 20, 2023 /PRNewswire/ -- The Ehlers-Danlos Society, the global non-profit dedicated to advancing and accelerating research in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), today announced it has received a $6.7 million funding commitment from the Mike and Sofia Segal Foundation (the "Foundation") to advance its groundbreaking research initiatives.

Key Points: 
  • The support from the Mike and Sofia Segal Foundation is invaluable in propelling our research towards earlier diagnosis.
  • In 1978, Mike and Sofia Segal arrived in the U.S. from present-day Ukraine with $120, a young child, and just two suitcases.
  • The partnership between the Ehlers-Danlos Society and the Foundation marks a significant leap forward in the quest for breakthroughs in EDS and HSD research.
  • The Ehlers-Danlos Society and the Foundation hope this investment will serve as a catalyst, inspiring related contributions and collaborations within the scientific community and beyond.

ANGEL AID Unveils Raregivers™ Global Mental Health Initiative for Caregivers, Patients and Professionals

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星期二, 七月 12, 2022
Disease, Strathcona County, Grief, Mental health, Education, Map, Nursing, Dr. Haass Social Assistance Fund, Microsoft, Hope, Congress, Thistle, Wellness, Patient, BioCryst Pharmaceuticals, CEO, Degenerative disease, Diagnosis, IONIS, Time, Amy, Horizon Therapeutics, Ehlers-Danlos Society, SCN2A, Caregiver, Drug development, Pharmaceutical industry, Medicine, Sanofi

We have a global mental health crisis in the rare disease community.

Key Points: 
  • We have a global mental health crisis in the rare disease community.
  • The Raregivers Emotional Journey Map details the six stages of emotional suffering, from pre-diagnosis to survivorship, in order to help the field build sustainable mental health support systems.
  • Based in Orange County, California, ANGEL AID , a 501(c)(3) organization, currently supports rare families across thirty-three countries, with plans to connect and educate 3.5 million Raregivers by 2026.
  • ANGEL AID provides mental health and wellness services to rare caregivers, patients and professionals through sustainable psychosocial training, transformative retreats and a connective caregiver-to-caregiver multilingual network.

Inspire unveils critical rare disease patient insights at NORD 2021

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星期一, 十月 18, 2021
Ehlers-Danlos Society, Caregiver, Organization, Time, Patient, Growth, Ehlers–Danlos syndromes, Community education, Hypermobility spectrum disorder, Foundation, Kate Humble, FSR, Degenerative disease, EDS, Poster, HSD, Menopause, Neurofibromatosis, Disease, Sarcoidosis, Microdeletion syndrome, CEO, Research, Pharmaceutical industry, Management, Health insurance

ARLINGTON, Va., Oct. 18, 2021 /PRNewswire/ --Inspire, the vital health community for millions of patients and caregivers, will present insights and findings from patient journeys and experiences from two rare disease studies in the virtual poster hall, in the Patient Community Building in Rare Diseases category at this year's NORD Rare Diseases and Orphan Products Breakthrough Summit, October 18-19, 2021.

Key Points: 
  • ARLINGTON, Va., Oct. 18, 2021 /PRNewswire/ --Inspire, the vital health community for millions of patients and caregivers, will present insights and findings from patient journeys and experiences from two rare disease studies in the virtual poster hall, in the Patient Community Building in Rare Diseases category at this year's NORD Rare Diseases and Orphan Products Breakthrough Summit, October 18-19, 2021.
  • The first study, "Motivations for joining rare disease online support communities," conducted by Inspire in collaboration with Inspire community partners, Foundation for Sarcoidosis Research (FSR) and Neurofibromatosis Network (NF Network).
  • Inspire supports over 700,000 patients affected by rare diseases, with about 46,000 members affected by neurofibromatosis and over 100,000 members affected by sarcoidosis .
  • Brian Loew, CEO of Inspire, adds, "I've been humbled by the growth and engagement in our rare disease groups.

Born This Way? When Hypermobility Has Its Privileges - and Problems

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星期三, 五月 23, 2018
Anatomy, Contortion, Connective tissue, Collagen disease, Syndromes, Rheumatology, Ehlers-Danlos Society, Hypermobility, Ehlers–Danlos syndromes, EDS, Ehlers, Hypermobility syndrome

As part of Ehlers-Danlos Awareness Month 2018, The Ehlers-Danlos Society is raising awareness about hypermobility within the dance, gymnastics, and acrobatic communities and help families understand the challenges hypermobility may present.

Key Points: 
  • As part of Ehlers-Danlos Awareness Month 2018, The Ehlers-Danlos Society is raising awareness about hypermobility within the dance, gymnastics, and acrobatic communities and help families understand the challenges hypermobility may present.
  • Joint hypermobility, one of the most prevalent symptoms across multiple types of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) can be advantageous in certain sports and activities.
  • And researchers have observed a high prevalence of joint hypermobility among dancers and gymnasts.
  • Hypermobility is often seen as advantageous for these athletes, literally giving dancers, gymnasts, acrobats, and skaters a "leg up" on their competition.