The Norrie Disease Association held its 4th conference 9th-11th August at the Massachusetts Eye and Ear Hospital, Boston 2018.
It was an amazing coming together for around 26 families from the US, Canada, Belgium, UK and Argentina. Some families were meeting for the first time and others were re-uniting but all families made the most of every minute over the 3 days.
Dr Amina Al-Yassin from University College London Great Ormond Street Hospital and Wendy Horrobin, NDF Chair and Coordinator joined the conference to learn about the Norrie Disease Association’s progress in supporting the global Norrie community; to share news from the UK Norrie community and to explore ways of collaboration between the Norrie Disease Association and the Norrie Disease Foundation.
The Norrie Disease Association did a fantastic job of securing excellent speakers and presentations for the conference – finding the balance between information; techniques in gene therapy, behaviour management; research and hearing aids – all very positive and generating much thought and conversation between families.
The first full day of the conference opened with an uplifting speech from John Miller, NDA President who shared their progress and passion to support the global Norrie community. Presentations included Professor David Corey, Bertarelli Professor of Translational Medical Science at Harvard Medical School; Dr Florian Eichler, Director of the Center for Rare Neurological Diseases at Massachusetts General Hospital; Dr Antonio Capone Jr, an internationally recognized clinician, surgeon and educator specializing in retinal issues that present with Norrie disease; Dr Amina Al-Yassin, Clinical Fellow in Genetics at Great Ormond Street Hospital for Children in London who presented findings from the Norrie advocate for persons with disabilities. All of these presentations are available on the Norrie Disease Association website.