EMEA Joins EPF
The European ME Alliance has been accepted as a full member of the European Patients' Forum (EPF), the leading umbrella organisation representing patients across Europe.
This is a significant step forward in the fight for recognition and protection of the rights of people affected by myalgic encephalomyelitis in Europe, strengthening their voice in European health policy forums.
EPF brings together 78 patient organisations from 21 European countries, representing over 150 million
people, including national platforms and disease-specific associations.
Its members represent specific chronic disease groups at EU level.
Its mission is to strengthen the collective voice of patients in Europe through advocacy,
education, empowerment, and collaboration.
These objectives closely align with those of EMEA.
EMEA participated in EPF’s recent annual meeting,
a two-day event that gathered leaders of national patient organisations from across Europe.
EMEA Chairperson/President Gracemarie Bricalli presented EMEA’s work at the meeting
and emphasised the urgent need to raise awareness of ME.
Notably, several participants reported that there are no ME-specific
patient organisations in their countries — and, alarmingly, some had never even heard of the disease.
Although not a surprise for EMEA, this nevertheless highlights the serious lack of
institutional recognition and the need for coordinated European action.
EMEA welcomes the opportunity to be a member of the European Patients' Forum, to join efforts to advocate for patient rights across Europe and to work on a broader range of patient issues, such as:
- How patients can file claims against medical neglect
- How to build capacity in associations where members are ill and have extremely limited physical and financial resources – or in countries where no patient organisation exists
- How to harness artificial intelligence
EMEA will continue to raise awareness of ME and advocate for policies that improve the quality of life
for patients.
It will contribute to EPF with its expertise in the challenges facing patients with invisible diseases,
in symptom management for conditions currently
without a cure, and in advocating for diseases that are under-researched and under-prioritised.
As an EPF member, EMEA will benefit from strategic resources and collaboration opportunities, including training programmes, patient rights advocacy campaigns, and media communication guidelines. EPF has also offered to share its introductory seminar on artificial intelligence in an upcoming virtual meeting with EMEA members.
More information on EPF is available here.
Last Update: May 2025