On Friday 10th and Saturday 11th March Lesley attended the 3rd UK Genetic Disorders Leadership Symposium. The goal of the symposium was to bring together leaders of UK based genetic disorder charities and other patient advocates to learn from experts in the field, network, and share best practices.
The event was presented by Genetic Disorders UK in partnership with Global Genes. Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. Global Genes is a leader in rare disease patient advocacy working primarily in the USA.
The venue for the event was the Amba Hotel; an elegant grade II listed Victorian railway hotel dominating the front of Charing Cross Station. Vaulted corridors, a large stairwell with wrought iron detailing, and marble-columned ballroom certainly offered a refined setting for this event.
As with previous years, the night before the symposium started with a dinner and drinks reception at the hotel. Libby Clegg Paralympic, World, European and Commonwealth Champion sprinter was the keynote speaker at the dinner. She talked about her own experience of being diagnosed and living with a genetic disorder. She talked us through her journey in to sport and how a deteriorating eye condition had such an impact on that journey and her life. But despite all the difficulties along the way, she managed to win two gold medals at the Rio Paralympics in 2016.
The evening provided a great opportunity to network with other people working in the rare disease field with similar goals and aspirations. The hard work of those who have been in the field for more than 15 years was recognised and rewarded with UKGD’s own Champions of Hope Awards. And those organisations just starting out were gifted boxes containing words of wisdom from the 100 other charity leaders attending the event.
Saturday had a full and varied agenda. Starting at 08.40 and finishing at 17.00, the day was long and mentally tiring, but at the same time, the line-up of eminent speakers made it a valuable and inspirational day.
Caroline Harding CEO of Genetic Disorders UK, opened the symposium, welcoming delegates and providing an overview of the day ahead.
The morning session opened with presentations on how Brexit will impact on UK medical research and patients with genetic disorders. Nisha Taylor Head of Policy & Public Affairs from the Association of Medical Research Charities set the scene for Brexit. She said that whilst there are risks there is also hope and significant collaborative opportunities.
The morning continued with presentations from a number of engaging medical professionals and stories of inspirational journeys by a variety of charities, with the theme ‘How to engage and sustain the interest of medical professionals in a rare genetic disorder’. We heard how Healthcare at Home came about following the founder’s own personal experience of losing a family member and realising hospital is not always the best environment for someone in their final days of life.
Patricia Osborne CEO of the Brittle Bone Society who spoke at our 3rd Patient Workshop at Alexandra Palace in 2014 talked about the challenges of rare disease research. She talked us through the timeline to their first Scientific Symposium and the impact of collaboration with Disability Action Alliance. She closed with a video from their youth conference which highlights the need to improve care as young people with rare and genetic conditions make the transition to adult services.
We were taken in to the realm of media by Sam Carlisle and Sally Land Co-Founders of Cause Communications. They helped us understand what media are looking for and how PR can be so beneficial to help us raise awareness and get our message heard. We were given simple ways to raise awareness, how to manage media relationships and what to do in a crisis.
I was particularly interested to hear Rebecca Stewart talk about Rare Revolution Magazine. This is a free digital magazine that gives a voice to people affected by a genetic disorder and the charities that support them. They are embarking on a really exciting project extending the Rare Revolution Magazine to include a kid’s edition, created for children by children! We have recently become members with Rare Revolution and look forward to working with them in the future.
One of the most amazing presentations of the morning came from Margarita Sweeney Baird, Founder of Inclusive Skating. In 2010 Margarita realised ice skating was not included in the Paralympics. As a result of this, she formed a working group with the common purpose to develop ice skating for skaters with a disability or impairment and, to obtain recognition for ice skating to become a Paralympic sport. She talked about developing sporting opportunities for people with genetic disorders and creating the first Inclusive Skating for Genes British Championships. Margarita was so passionate and the thing that inspired me most from her presentation was when she said, ‘let’s see if we can get inclusive sport for genes’.
Lunch provided another opportunity to network and share experiences with other charity members as well enjoying the exceptional cuisine laid on by the hotel.
The afternoon continued with a look at the evolution and future of bone marrow transplantation (BMT). We were taken through the history of BMT for genetic disorders and how methods have progressed over the years. Ben Nunn from SHCA outlined the implications of NHS England and NICE’s proposed changes to the way treatments are appraised and funded by the NHS. Whilst Derek Hill talked about the JustGiving platform and how we can use this tool to raise more online by making people feel part of our movement or community. The appeal of a specific, tangible story more likely to be visited, shared more and so raise more funds.
Caroline Harding announced two new incentives being launched by Genetic Disorders UK over the coming weeks. She said that 1 in 5 charities report their organisation is struggling to survive. However, if we work together, we can raise the profile and increase the reach of all genetic disorders. The first incentive, to share on a 50/50 basis the income from all new schools and organisations that hold a Jeans for Genes Day with their chosen affiliated charity. The second incentive, to have a Genetic Disorders Awareness Month. There was much excitement and discussion around these ideas and something many small rare disease charities like the AKU Society will eagerly sign up to and benefit from.
The day closed with afternoon tea and a wonderful array of sandwiches and cakes. With a final opportunity to network and consolidate the wealth of knowledge and expertise in the room, to finish off an incredibly valuable and informative experience.