Brazilian Association for people with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders (ABRASED)
São Paulo, Brazil
João helps run a national association in Brazil to unite patients, raise awareness, and promote earlier diagnosis of EDS and HSD through collaboration, advocacy, and shared expertise.
Why I started this group
The founding of ABRASED resulted from a coalition of efforts by representatives of various regional Ehlers Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) groups in Brazil, as well as the social projects “Direitos dos Sedianos” and “SED Zebras” with the direct and indirect support of numerous patients, family members, and professionals from various fields of knowledge.
Based on virtual debates held in November 2021, during the “IV International Congress on Hypermobility, Ehlers-Danlos Syndrome and Pain” and the “III International Meeting of Hypermobile Patients (EDS patients)”, organized by Dr. Neuseli Lamari, Dr. Mateus Lamari, and Dr. Carolina Baeza-Valasco, the need to formally organize became clear.
There was a need for an active, transparent, and representative national association to support the interests of the Brazilian EDS community and promote early and differential diagnosis of EDS and HSD across the country.
What the group offers
ABRASED (Brazilian Association for people [MM5.1]with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders) is a non-profit private law institution. It was established as an association of a social, philanthropic, organizational, promotional, assistance, educational, recreational, scientific, cultural, sustainable, technological and health nature, of indefinite duration and national scope.
ABRASED’s mission is to encourage, promote, and disseminate scientific and technological knowledge and innovations about EDS and HSD and their possible comorbidities or associated conditions. We guide and support patients and their families, caregivers, or legal guardians to improve diagnoses, treatments, and quality of life. Through the implementation of its social objectives, we aim to guarantee the rights of all actors involved
Impact on the community
ABRASED’s activities have enabled continuous and voluntary support for people with EDS and HSD. This support includes daily virtual assistance, information dissemination, scientific outreach, and community engagement in Brazil and even abroad. The organization takes legal, administrative, fiscal, data security, and ethical concerns seriously in all its actions, projects, and institutional partnerships. These partnerships include universities, research institutes, genetic testing laboratories, and service providers.
A memorable moment was the ABRASED Founding General Assembly, held virtually on May 1, 2023, after a year and a half of intense collective work. During this period, the group drafted the rules of its bylaws and structured a participatory governance model.
The 8 founding members were Carolina, Gabrielle, Josiane, Maria Alice (in memoriam), Ayumi, Yuka, João, and Carine. They joined together to create a new and engaged national association for people with EDS and HSD, with transparency, solidarity, and resilience. This was achieved despite the personal, professional, and health challenges faced daily by each of the volunteers, all of whom are patients.
There were many obstacles before the association could be founded, and these were overcome with focus, patience, and a great deal of determination among those involved. In addition, a crowdfunding campaign to cover the initial registration costs of the association was held by the project “SED Zebras.”
Currently, ABRASED has over 150 registered members from all regions of Brazil. In addition, we have more than 70 health and legal professionals participating in our thematic study groups focused on discussion, scientific updates, and the creation of guides and technical materials on EDS, HSD, and comorbidities.
What it has meant to me
Leading ABRASED since 2024 has given me the opportunity to improve several skills. These include strategic vision, active listening, assertive communication, intra‑ and inter‑institutional articulation, community coordination, advocacy, and technical knowledge in health and regulation.
Advice for others
The pace of volunteer work is often different in support groups for volunteers who also have EDS or HSD. The organization should seek to respect the health and personal needs of everyone involved, so that there are no unnecessary collapses and the organization remains resilient.
ABRASED (Brazilian Association for people with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders) is a non-profit private law institution. It was established as an association of a social, philanthropic, organizational, promotional, assistance, educational, recreational, scientific, cultural, sustainable, technological and health nature, of indefinite duration and national scope.
