Eurordis's Rare Disease Conference, Prague, 3-4 June 2026
Julie Wootton and Mandy Sanderson represented Max Appeal at Eurordis's Rare Disease Conference 2026 in Prague.
EURORDIS – Rare Diseases Europe - is a unique, non-profit alliance of over 1,000 rare disease patient organisations from 77 countries that work together to improve the lives of over 30 million people living with a rare disease in Europe.
Talks included newborn screening approaches, genetic therapies and interventions, models of Patient Reported Experience Measures (PREMS) for rare diseases and holistic care, recognising that rare disease experiences across different countries and healthcare experiences share many consistencies in respect of what is important to people affected by rare diseases and their families, such as care-co-ordination.
Iolo Eilian, the Health Service Executive Assistant National Director, Patient and Service User Experience (Ireland) described HSE Ireland’s patient partnership model that was built on the consistent engagement, partnership and advocacy of Anne Lawlor from 22q Ireland; and discussed the increasing political recognition of the importance of patient engagement and involvement for care models that meet the needs of patients.
Max Appeal connected with academics, researchers, clinicians and patient groups helps to inform collaboration in healthcare policy and services and research for people with 22q11.2 deletion.
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