FS2023 Charitable Partner

Since its creation in 1992, FS strives to keep charity at the forefront of its initiatives year after year. This year FS celebrates 31 years of creativity, inclusivity, self-expression, and, most importantly, 31 years of non-profit impact in support of our charitable partners.

Over the last couple of years, the COVID-19 pandemic shut down many parts of the world and, put a massive strain on healthcare services globally. These trends have compelled FS to re-examine how we connect with our international audiences and our charitable partners. Our reflections on the effects of the pandemic have prompted us to support a healthcare-based charity. After careful consideration, FS2023 has decided to partner with Genetic Alliance UK.

Although national restrictions have slowly been easing around the world, the effects of the pandemic have left a more permanent mark on the world and continue to affect millions of people. The strain placed on healthcare institutions to protect people’s lives was enormous. As the world collectively garnered support for research, resources, and aid in regard to COVID-19, many other healthcare services were still under strain with more limited access to resources and support. 

For that reason, Genetic Alliance UK is where the FS2023 committee felt our charitable donation would make the most impact. Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare, and undiagnosed conditions in the UK. FS2023 Head of Charity, Emma Hartpence, said “We are beyond excited to be partnering with a true grassroots organisation and give a voice to people suffering with rare and unnamed diseases.” Genetic Alliance UK supports research into genetic testing, campaign and engage with decision makers, as well as partnering with over 200 support groups for people with rare genetic diseases.

Executive Director, Carleton Blackwell, said of Genetic Alliance UK, “As someone who has had a family member who’s life was deeply affected by cancer caught through genetic testing, it is an honor to work with Genetic Alliance UK. Their work focuses on those who largely go unseen in the grand scheme of healthcare, especially given COVID-19, with genetic diseases so rare they go unnoted. It’s an incredibly proud moment to be partnering with them, and I’m very excited to see what we can achieve with them.”

Genetic Alliance UK’s strategy comes in three parts:

Building their community: Supporting and developing communities by providing an excellent range of services to our members, new groups and everyone affected by these conditions.

Building greater awareness: Creating the impetus for positive action by increasing understanding within the general public, the health and social care community, and with policy makers.

Building their organisation: Maximising our capacity to deliver a programme of sustainable growth, continued improvement and development.

For one cause: driving progress- Improving outcomes for everyone affected by genetic, rare and undiagnosed conditions through evidence-based influencing and campaigning.

Within the Genetic Alliance UK family, they run two long-standing projects: 

– Rare Disease UK: A campaign focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that people and families living with rare conditions have access to a final diagnosis, coordinated care and specialist care and treatment.

– SWAN UK: The only dedicated support network in the UK for families affected by a syndrome without a name – a rare genetic condition that often remains undiagnosed.  

Charity team member, Peia Douglas-Dufresne, said of our charitable partner, “Personally, I was inspired by their mission to ensure that people suffering from rare and undiagnosed conditions are recognised and understood, improving the outcomes for everyone affected directly.  Their work is not only vital for those who are currently being affected by these conditions but builds communities with infrastructure put in place to support people affected by these conditions in the future.”

Genetic Alliance UK is an incredible organisation and we are extremely honored and proud to be partnering with them for FS2023!

Learn more about Genetic Alliance UK here.