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“Re-shape, Re-form, Re-imagine a true partnership with families living with Rare Diseases”

Come and join a conversation with us on the 28th of February, which is Rare Disease Day, and this IFNA-UK Ireland chapter webinar is focused to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families, and carers. Help us build rare disease awareness.
A panel conversation with:
Suja Somanadhan: Assistant Professor and Head of Subject in Children's Nursing, UCD School of Nursing Midwifery and Health Systems, University College Dublin, Ireland, Rare Disease Research Partnership (RAINDROP Lead, the primary research focus of Suja’s work is based on people’s experience of living with rare diseases.

Anne Lawlor: Mother and founding member of the 22q11 Ireland Support Group. The group, set up in 2007, supports Irish families affected by 22q deletion syndrome.

Julie Power: Founder and Patient Contact of Vasculitis Ireland Awareness, an all-island of Ireland support group for those affected by any of the Vasculitis diseases. Member of the NIRDP, IPPOSI and Vasculitis International Boards of Directors ERN RITA Board member and RIPAG Autoimmune patient representative Fellow of the European Patients Academy (2015). Julie Power will be addressing the day-to-day challenges of living with a rare illness.

Les Martin: Dad and Newborn screening advocate. Les Martin will discuss the importance of the expansion of the newborn screening programme in Ireland.

Lora Ruth Wogu: Founder and CEO of Sickle Cell and Thalassaemia Ireland, Chief Operations Officer of the European Sickle Cell Federation

Marcia Van Riper: Joint appointment in the School of Nursing and the Carolina Center for Genome Sciences at the University of North Carolina at Chapel Hill. The primary focus of Marcia’s program of research is the family experience of being tested for and living with a genetic condition, with special emphasis on families of individuals with Down syndrome.

Alison Metcalfe: Academic and Entrepreneur

Feb 28, 2022 12:30 PM in Dublin