The Hypermobility Syndromes Association

The Hypermobility Syndromes Association (HMSA) is a UK-based charitable incorporated organisation dedicated to supporting individuals affected by hypermobility syndromes. Registered under Charity number 1186735, the HMSA provides information, peer support, and educational resources for people living with symptomatic hypermobility, regardless of diagnosis status or severity of symptoms[1][4].

Overview

Founded in 1992, the HMSA is a patient-led organisation that aims to improve the lives of hypermobile individuals through a holistic and solution-focused approach. It supports people with various hypermobility-related conditions, including Joint Hypermobility Syndrome, Ehlers-Danlos Syndrome (all subtypes), Marfan Syndrome, and other related connective tissue disorders such as Stickler syndrome and Osteogenesis Imperfecta[4][5].

Activities and Support

The HMSA offers a comprehensive range of services and resources for patients and their wider support networks:

• Information and Advice: The organisation provides clear, evidence-based information accredited by the Information Standard, ensuring reliability and medical accuracy. This helps people understand hypermobility syndromes, their symptoms, and management options[5].

• Peer Support: The HMSA operates a network of trained volunteer-led support groups across the UK. These groups offer practical and emotional support to affected individuals and carers.

• Educational Programs: The charity runs educational initiatives for both patients and healthcare professionals, including social workers, physiotherapists, occupational therapists, psychologists, and teachers, enhancing understanding and care quality across multiple disciplines[1][5].

• Research Collaboration: The HMSA facilitates participant recruitment for research studies and collaborates with other organisations to develop tools that improve patient access to services[4].

• Helpline and Online Resources: A dedicated helpline and extensive online materials provide ongoing support and guidance[2].

Membership and Outreach

HMSA membership is open to individuals, families, and professionals interested in hypermobility syndromes. Although primarily focused on the UK, the organisation’s resources and support are accessed by an international audience. Membership benefits include access to local and virtual support meetings, educational content, and involvement in advocacy efforts[4].

Governance and Staffing

Run by people personally affected by hypermobility syndromes, the HMSA benefits from the expertise of volunteers and staff, some of whom are medical professionals. This unique composition enables the charity to offer informed advice to both patients and healthcare providers. All group leaders and volunteers undergo appropriate background checks to ensure safe and trustworthy support provision[5].

Significance

The HMSA stands out as the sole UK charity offering both practical support and accredited, evidence-based health information specific to hypermobility syndromes. Its comprehensive approach addresses not only the medical but also the social and educational needs of this community, contributing significantly to improved quality of life and healthcare outcomes for affected individuals[1][5].

This article summarises the mission, activities, and impact of The Hypermobility Syndromes Association, a key resource for people living with hypermobility syndromes in the United Kingdom.

[1] https://www.hypermobility.org [2] https://www.hypermobility.org/support-and-advice [3] https://www.nhs.uk/services/service-directory/hypermobility-syndrome-association/N10954808 [4] https://www.ehlers-danlos.com/affiliate-and-support-group/the-hypermobility-syndromes-association/ [5] https://painuk.org/members/charities/hypermobility-syndromes-association/