Making the RARE voice heard
Celebration and collaboration is the heart of this event!
Photo credit: A. Cotterill/GDUK
For organisations with a focus on genetic disorders the Genetic Disorders Leadership Symposium is the highlight of the events calendar.
This unique event brings together charity and advocacy groups of all shapes and sizes, whose one common goal is to support and raise awareness for genetic disorders, GDUK founder and CEO, Caroline Harding’s vision for a symposium is one where charity organisations can learn from each other. A spirit of collaboration and sharing of skills and innovation, that each group has fostered in their drive to improve the lives of the patients they support, has resulted in this superb event, now in its third year.
This year’s event was no exception with a mix of talks from both charity organisations and industry.
Nisha Taylor, Head of policy and public affairs at the Association of Medical Research Charities kicked off proceedings by out-lining the potential impact, both positive and negative, of Brexit on the rare disease community and spoke of what the AMRC are doing to ensure the concerns of their members are heard.
Educating the professionals
There were great examples of how to create consensus document by Claire Hennessey, Max Appeal and guidance for up-dating disorder guidelines and the provision of accredited training days from and Dr. Julia Vallortiga, Ataxia UK, both of which are vital in the fight to raise awareness and educate medical professionals on little known conditions
Scientific communities and the power of red wine.
Both Patricia Osborne, Brittle Bone Society and David Hartley XLP Research Trust shared their strategies and tactics for hosting successful scientific symposiums, with building a community and red wine coming up high on their list of ‘how to entice researchers to attend!’
Inclusive Skating founder, Margarita Sweeney-Baird gave an impassioned speech on the lack of ‘inclusion’ for people with genetic disorders in sport and talked about how through her work, she has established the Special Olympics figure skating programme and is hosting the first ever Inclusive Skating for Genes British Championship to be held in Glasgow from the 11th – 14th April.
Making the most of media and achieving positive PR
Cause Communications and Just-Giving gave great advice for making the most of your campaign in the press and maximising your fund-raising pages, whilst here at Rare Revolution we spoke of the importance of providing a ‘safe’ platform for patients and charities, and announced our Rare Revolution Kids edition due for launch in October.
Photo credit A. Cotterill/GDUK
Rebecca Stewart - Rare Revolution Magazine
Kay Parkinson, Cambridge Rare Disease Network, told the patient journey of her own two children, who after years of misdiagnosis lost their lives, as a result of Alstrom Syndrome, aged 25 and 29. Kay’s unwavering determination has led to a drug trial for improving organ fibrosis in patients with Alstrom and makes her a driving force for change.
Research fellow at the Wingate Institute for Neurogastroenterology, Lisa Jamieson’s personal account of how her spontaneous cerebrospinal fluid leak and subsequent diagnosis of hypermobile Ehlers-Danlos syndrome, and a lack of published information, led to her own research, in the effects of diet and nutrition on patients with Ehlers-Danlos syndrome.
There were many other insightful and inspirational presentations throughout the day from charitable organisations, industry and research professionals giving attending delegates much to learn and take back to their own organisations.
From the networking dinner on the Friday evening through to afternoon tea at close of conference on the Saturday, Caroline and her team at Genetic Disorders UK have thought of everything to ensure their Leadership Symposium delivers in both content, and delegate experience, making it a stand out event.
Here at Rare Revolution we are already looking forward to GDUK 2018.
You can read more about this event including details of their first Champions of Hope awards in our Spring Edition out soon.
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Rare Revolution Editor