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RP Fighting Blindness


National sight loss charity holds weekend conference for families affected by progressive inherited sight loss


First RPFB Families Conference huge success, with 150 delegates in attendance


Buckingham-based national sight loss charity RP Fighting Blindness recently held its first ever Families Conference in Milton Keynes, for families affected by inherited progressive sight loss. This free event saw 150 people attend from across the UK for a three day programme of speaker presentations, interactive workshops, fun activities and Q&A sessions.

As well as funding a broad medical research programme, RP Fighting Blindness provides information, support and services to people affected by inherited retinal dystrophies, which cause progressive sight loss. The Families Conference was developed to provide families affected by inherited sight loss the opportunity to meet and socialise in an informal setting, and to learn more about the services and support available to them.

Older children taking part in the weekend had the chance to go on an outdoors activity day trip, consisting of sailing, archery, zorbing and canoeing. MK Dons disability players also ran activity sessions, with football training, games and a beat the goalie competition.

Charities including Guide Dogs and RNIB ran workshop sessions, and speakers included eminent researchers such as Prof Graeme Black, Director of the Manchester Centre for Genomic Medicine, and Prof Andrew Webster Consultant Ophthalmologist at UCL. Other speakers ranged from Eye Clinic Liaison Officers to child psychologists, and genetic counsellors to RP Fighting Blindness trustees.

Bhavini Makwana, a Families Conference delegate who attended with her husband and two daughters, commented “What a fantastic RP Fighting Blindness Families Conference, which proved to be a huge success; lots of information shared, advice gained, well organised and connecting with people all going through the same fears, dilemmas, concerns and giving each other hope.”

“We’re truly delighted that our delegates had such a great time, and that the event proved such a success,” commented Tina Houlihan, Chief Executive at RP Fighting Blindness. “Enabling peer-to-peer support is a hugely important part of our work; by facilitating this event, we’ve allowed families, some of whom may have felt isolated, to socialise with and learn from one another. It’s thanks to the support of our generous sponsors including Spark Therapeutics and sight loss charity VICTA, and the help of so many volunteers like the MK Dons, that we were able to hold this event. Our most sincere thanks must go to everyone who contributed.”

An important part of the weekend was to gain feedback and information from families affected by progressive inherited sight loss, and to help shape the future direction of the charity’s patient support services. The charity intends to grow its patient support and services remit over the coming years, with the recent Families Conference the first step in the journey.

RP Fighting Blindness conference group photo 2017

 RP Fighting Blindness conference boat photo 2017

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