I have been a Volunteer in the rare disease community for 24 years , following my Father’s diagnosis of PSP in 2001. In this time , I have used my experience of caring for a family member and my experience in the Education system to advocate for the community and educate across different sectors around the needs of individuals and their families living with a rare disease. I have also worked with several Charities supporting children and adults with a rare disease. I supported the inception and launch of NIRDP in 2014 and have been involved in many strands of work , including setting up a local group in Foyle and NW in 2016 , which continues to grow and thrive. Recently , my efforts have focussed on the implementation of the NI Rare Disease Action Plan and specifically on Education , addressing the needs of children in schools with a rare disease. I am passionate that all children have access to an education that supports their needs , celebrates their talents and fulfil their potential. This is a basic human right for all children and we have work to do to educate everyone supporting our children from advance preschool planning and onwards on their journey with a holistic approach. It is a privilege to be a part of our amazing community and partnership and I look forward to seeing the roll out of outcomes from the NI rare Disease Action Plan to realise the mission that “no one is disadvantaged due to the rarity of their condition “.