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Patient Advisory Group

Living with a rare condition can be very isolating due to the small numbers of people with each condition and a lack of knowledge and expertise regarding particular conditions.

Our Patient Advisory Group brings together patients, families and carers to connect and integrate them into the Office for Rare Conditions and the decisions that influence its work.

Led by Arlene Smyth, the group meets regularly to discuss patient and personal experiences of living with a rare condition. If you would like to discuss patient-related concerns or share your experience, please get in touch with the Office.