Objectives | Vision | Mission | Goals

Established in January 2020, the Ehlers-Danlos Syndrome - India Foundation (EDS-IF) is the leading Indian organization working towards change for those with the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD). 

The EHLERS DANLOS SYNDROME - INDIA FOUNDATION (EDS-IF), became an alliance partner with EHLERS DANLOS SOCIETY in May 2025.

Today, we mark the years of tireless advocacy, groundbreaking research, and a growing global community of people dedicated to changing the lives of people with EDS and HSD. What started as a dream of a more connected and empowered world for those living with these complex and often misunderstood conditions, has become a PAN INDIA movement that is shaping the future of care. 

Objectives:  

1. Building an integrated network of specialists

• Identify and connect with healthcare professionals across India with knowledge and experience in EDS and HSD.

• Develop an accessible EDS - Aware Healthcare professionals Directory including rheumatologists, geneticists, physiotherapists, pain specialists, cardiologists, gastroenterologists, psychologists, occupational therapists, and other relevant allied healthcare professionals. 

2. Educate and empower healthcare professionals

• Facilitate continuing medical education of Healthcare professionals through webinars, workshops, conferences, and collaborations with international subject - matter experts. 

• Support opportunities for them to engage with the latest research, diagnostic criteria, and evidence-based management of EDS and HSD.

3. Collaborate with Global Experts

• Strengthen our partnership with the Ehlers-Danlos Society (USA) and other relevant international organizations.

• Facilitate bringing global knowledge, research, educational resources, and best clinical practices to India.

4. Support Patients and Families

• Build a nationwide support community where individuals with HSD & EDS and their caregivers can connect, learn, and find guidance.

• Developing & facilitating access to reliable education resources, relevant healthcare information to help families navigate diagnosis, treatment, and daily living, while recognising the individual nature of medical care. 

5. Raise Awareness Across India

• Increase awareness & collaboration among healthcare professionals, educators, policymakers, and the public.

• Reduce delays in diagnosis and improve an informed understanding of EDS and HSD.

6. Encourage Research and Advocacy

• Promote research on EDS and HSD within Indian Context.

• Advocate for appropriate recognition of disability and accessibility needs associated with EDS and HSD.

• Advocate towards healthcare policies, better access to multi-disciplinary care.  

Vision:

Across INDIA, people with EDS or HSD will be connected, heard, supported and have equitable access to care. 

To build an informed, connected, and compassionate India where every person living with Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) has timely access to accurate diagnosis, multidisciplinary care, evidence-based treatment, and a supportive community—regardless of where they live. 

Mission:
We are the voice of the EDS and HSD community in INDIA.

We bring together people with EDS and HSD in the INDIA to equitably access diagnosis, treatment and care. We do this through:

• Awareness – We advocate for and empower our community of 1.6 Billion population to drive change. We raise voices, and work with various hospitals, medical institutions, public awareness, states & union territories, and district organizations across INDIA in pursuit of services accessible by all.

• Support – We provide a platform to support and connect our community. We deliver information and advice on living with EDS and HSD.

• Knowledge – We build knowledge through information, training and enabling research. We confront misunderstanding and challenge inequality.

Goals: 

As the EDS India Foundation (EDS-IF), we are committed to creating a future where every individual with EDS or HSD feels seen, heard, and supported. Through education, collaboration, research, and community, we aim to bridge the gap between patients and specialists while bringing global expertise to strengthen systems of healthcare across India.