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Genetic Alliance UK Annual Conference 2019

  • Posted on Nov 1, 2019

We were delighted that Gem Turner was able to represent the Brittle Bone Society recently at the Genetic Alliance UK Annual Conference and AGM. Read on to hear all about Gem’s account of the day.

“On 15th October I was invited to the Genetic Alliance UK Annual Conference which brought together, health professionals, patients and families to share experiences living or supporting people with rare conditions.

The morning was introduced by Baroness Nicola Blackwood who spoke passionately about her work with supporting rare diseases. Her update included the introductions of new drugs available now in the UK, as well as developments to have Artificial Intelligence to detect early diagnosis.

It was announced that Genetic Alliance are launching a new campaign called “Action for Access” which is around access to rare medicines. Updates will be available once it is launched. Next was a panel about engaging with the media. This was interesting to hear from different media names about how to get rare diseases out. The main advice was to know your aim first. Do you want to raise money or awareness, for example? I even asked a question from a bloggers point of view about working with the media to make sure the framing of stories has a positive light for disabled people.

There was also an announcement about a “Rare Film Festival” happening in 2020. There was a call for people interested in film and media to create their own films. This will then be entered into a competition and the winning short films will be shown at the festival.

After lunch was the AGM where 4 new Trustees were voted on. Everything was business as usual and the AGM only lasted 20 minutes ending with a great video from Genetic Alliance about their successful year and what they had achieved.

The main part of the afternoon was split into 4 workshops and attendees had to pick 2 workshops. I chose “UK Parliament Training” and “Engaging with social research and clinical research”. The parliament session was by far my favourite workshop as I learned a lot about how to try and make change locally. The group also discussed that the success of working with your local MP all depends on who they are and postcode luck. It was suggested that if there is an MP is passionate about health or rare diseases, there is no harm in contacting those MPs instead.

If I am honest the social and clinical research workshop seemed like BBS was beyond the advice they gave. This workshop was aimed more at people who were on their own trying to create a group for an unknown rare disease. The workshop was however, very emotive as we heard from Dan Lewi who spoke about his daughter’s life and how he is trying to raise awareness of Tay-Sachs and stop children dying from this disease.

Overall, I had a great day and spoke with many different charities and family members. I even managed to meet someone who knows 2 members of the OI community, what a small world!”