Webinar – Partnerships with Families Living with Rare Diseases

We invite you to attend our fifth IFNA – UK and Ireland Chapter webinar, titled “Re-shape, Re-form, Re-imagine a True Partnership With Families Living With Rare Diseases.”

The free webinar will take place on Monday 28 February 2022, from 12.30pm until 2pm GMT, on Zoom. Click here to register!

Coinciding with Rare Disease Day, the webinar will focus on raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families, and carers. Help us build rare disease awareness.

The webinar will feature a panel conversation with:

  • Suja Somanadhan: Rare Disease Research Partnership (RAINDROP Lead, Assistant Professor and Head of Subject in Children’s Nursing, UCD School of Nursing Midwifery and Health Systems, University College Dublin, Ireland. 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 in Ireland.
  • Lora Ruth Wogu: Founder and CEO of Sickle Cell and Thalassaemia Ireland and European Sickle Cell Federation. Also, consultant on Diversity, Equity and Inclusion in Quality Patient care.
  • 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.

This is our fifth webinar, and the first in our 2022 webinar series hosted by the Chapter focused on developing, promoting, and sustaining a discourse around approaches to family nursing education, practice, and research within the healthcare settings. The webinars are free of charge, and open to everyone!