Društvo bolnikov Zebra

The Zebra Patients Association is an independent, non-profit organisation dedicated to research, advocacy, and support for people living with ME/CFS and related complex, chronic conditions. Its guiding message is simple and powerful: with us, you are never alone.

The association supports individuals affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), connective tissue disorders, and other conditions characterised by Post-Exertional Malaise (PEM), chronic fatigue, chronic widespread pain, and associated systemic complications.

Founded to connect patients with ME/CFS, facilitate the exchange of information, and promote cooperation with experts, the association has grown into a broader support network for people living with overlapping and often under-recognised diseases.

Focus Areas

The association’s work centres on:

• Connecting patients and strengthening peer support
• Providing reliable information and practical guidance
• Promoting research into diseases involving PEM and chronic pain
• Collaborating with medical experts and international organisations
• Improving quality of life for people with chronic, complex illnesses

In addition to ME/CFS, many members live with rare genetic connective tissue diseases such as Ehlers-Danlos syndrome, as well as other connective tissue and rheumatic diseases including polymyositis, dermatomyositis, lupus, scleroderma, mixed connective tissue disease, Sjögren’s syndrome, and antiphospholipid syndrome.

The association also supports individuals with related hormonal, immune, metabolic, and autonomic conditions, including endometriosis, polycystic ovary syndrome (PCOS), Addison’s disease, Cushing’s disease, thyroid disorders, mast cell activation syndrome (MCAS), gastroparesis, vasospastic and microvascular angina, Raynaud’s phenomenon, postural orthostatic tachycardia syndrome (POTS), and other forms of dysautonomia.

Working Together at European Level

The Zebra Patients Association connects with patients, healthcare professionals, and organisations across Europe and globally. It collaborates in the field of care and advocacy for people with ME/CFS and Ehlers-Danlos syndrome, and participates in international networks aligned with its mission.

Through these partnerships, the association strengthens knowledge-sharing and cross-border cooperation.

Key Activities & Initiatives

• Building networks between patients and medical professionals
• Promoting research into diseases characterised by PEM and chronic pain
• Supporting patients in managing complex, multi-system conditions
• Raising awareness of rare and under-recognised diseases

At the heart of its work is a commitment to helping people with chronic illness find pathways toward improved daily functioning and quality of life.

Support for Patients & Families

The association provides:

• Peer connection and community support
• Information exchange and practical resources
• Guidance in navigating complex diagnoses and overlapping conditions
• Advocacy and representation for patients with rare and chronic illnesses

By creating a safe and informed community space, the organisation ensures that patients facing complex conditions are not isolated.

Support for Healthcare Professionals

• Opportunities for collaboration and knowledge exchange
• Information-sharing related to ME/CFS, connective tissue disorders, and PEM-related diseases
• Engagement with international expertise and networks