About

The Problem

Modern healthcare can achieve incredible things — but some people with undiagnosed or complex symptoms are forgotten in the system and miss out on vital interventions. Even patients with recognised conditions can be overlooked.

While there are charities for specific rare diseases, those who are misdiagnosed or fall between categories often have little support.
We want to change that.

Who we are

We are a multidisciplinary, international group of:

Healthcare professionals
Scientists and researchers
Public health experts
People with lived experience
Ethicists, chaplains, and spiritual carers
Campaigners, communicators, and politicians

We are united by one aim: to advocate for those overlooked in healthcare.

Our Purpose

We seek to improve health and wellbeing by:

Supporting people with medically unexplained or overlooked conditions
Developing resources and signposting services
Promoting education, awareness, and patient-centred care
Sponsoring and conducting research
Advocating for evidence-based change in policy and practice

Group Strategy

We take a holistic, example-driven approach, analysing selected conditions in depth so that insights can be applied more broadly.
Key areas of focus include:

Ehlers-Danlos syndrome (EDS)
Hypermobility spectrum disorders (HSD)
Porphyria
Fibromyalgia
Eosinophilic gastrointestinal disorders

Guiding Principles

We believe in a better way of working:

✅ Drive change where it’s most needed

✅ Collaborate, not duplicate
✅ Empower patients — they are the experts in their condition
✅ Tackle barriers to access and diagnosis
✅ Educate clinicians on interconnected symptoms across systems
✅ Promote inclusion, avoiding all forms of discrimination
✅ Apply multidisciplinary thinking — clinical, social, ethical, spiritual, and structural

Meet the Team

Chair

Dr Adrian Tookman – Palliative Medicine Physician (retired), Lead Field Editor Cochrane PaPaS review group, former Medical Director NHS Foundation Trust, London, UK.

Founding members

Katia Chrysostomou – Communications specialist, coach, and carer advocate, UK
Dr Eva Diehl-Wiesenecker – Emergency physician, Charité Hospital, Germany
Dr Kiran Jani – Anaesthetist with a focus on ethics, UK
Katharina Klesper – Health economist, Germany
Fiona Lapraik – Lay member, voluntary sector experience, UK
Dr Carlos Lifschitz – Paediatric gastroenterologist, USA & Argentina
Dr Philip Lodge – London, UK
Prof Bill Noble – Palliative care expert, academic, UK
Dr Chantal Patel – Associate professor in medical ethics, Swansea University, UK
Dr Minha Rajput-Ray – Chronic disease specialist with lived experience, UK
Dr Donna Sagar – Public health specialist (retired), UK
Dr Carmen Schmechel – Medical historian, Germany
Dr Leena Sinha – Gastroenterologist and ethics lead, UK
Prof Rajan Somasundaram – Emergency medicine and hepatology, Germany
Rev Dr Peter Speck – Chaplain, researcher in spirituality, King’s College London, UK
Dr Selena Stellman – London, UK
Richard Stephens – Patient advocate and journal editor, UK
Dr Jacques Tamin – Occupational physician and ethics lecturer, UK
Dr Steven Walker – Director, St GilesMedical, UK & Germany
Dr Christina Weiler-Normann – Internist and rare disease specialist, Germany
Natalie Woods – Researcher and Lived Experience Partner, NHS England, UK

Administrative support

Dr Steven Walker – St GilesMedical London & Berlin
Daniel Roberts – St GilesMedical London & Berlin

Personal stories

Comment from group member

“Last week, I was contacted by two of my former EDS patients who have no specialised support in the city of Sheffield or its neighbours. Both were managing their problems very well but were uncertain about new symptoms. As a retiree, I am no longer able to advise them, but pointed them to services for other conditions. I mentioned this group and they both were aware of many other individuals without medical support for a variety of EDS symptoms. The most worrying and inexplicable stories include antipathy and occasional hostility from some GPs and gastroenterologists. I hope this is local problem, but I doubt it.”