Attending the Genetic Alliance Conference 2017

Today Genetic Alliance held their Annual Conference in London, entitled “Upskilling Our Members”, with many charities taking part.

Aniridia Network trustee James Buller attended the event, taking the opportunity to engage with many leaders of charities very similar to our own, asking questions about the challenges we face. And he was able to help them too, such as advising on the use of Twitter.

Pauline Broomhead giving a presentation about Brexit at the Genetic Alliance Conference 2017

Speakers at the event gave updates on the achievements and future plans of the Genetic Alliance, and details on some of the latest research into rare diseases. The ongoing worries about the impact of Brexit on funding and collaboration on research into rare genetic diseases was also a hot topic.

Various workshops were held during the afternoon, with topics including social media, fundraising, specialised clinics and support services. James went to ‘Providing support for your community’, featuring speakers from the Breaking Down Barriers project and East Lancashire Community Genetics Team. The workshop promoted understanding of how genetics causes conditions and how to provide supportive and inclusive services to families. James proudly mentioned our own befriending scheme in that vein.

It was a great day, enabling charity leaders to share valuable information, views and experiences. More information can be found on the Genetic Alliance website.

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About Aniridia Network UK

A charity support group for people with the genetic visual impairment aniridia and their families in the UK. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. Registered as a charity in 2011 with HMRC reference XT26830
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