In a move which strengthens our role in genetic medicine policy making, the members of Genetic Alliance UK voted to appoint Haemochromatosis UK’s Chief Executive, Neil McClements to its board of trustees, earlier this month.
The Genetic Alliance is a national charity working across the UK to improve the lives of patients and families affected by genetic, rare and undiagnosed conditions. The Genetic Alliance brings together members from the full spectrum of genetic conditions, from the rare to the more common. It’s a coalition of over 200 patient organisations, including Haemochromatosis UK.
Like other patient organisations, our HUK community is profoundly affected by national policy in this important area of healthcare. We can all share and learn from each other to improve the care and lives of each of our communities.
The Genetic Alliance has a well-established and active All-Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions. The Genetic Alliance is also active in the Welsh Assembly and Scottish Assembly. Combined with our own All-Party Parliamentary group on Genetic Haemochromatosis, we will work through these forums to educate policymakers and advocate for the interests of people affected by genetic conditions.
Our Chief Executive Neil McClements thanked the HUK Board of Trustees for their nomination and GA’s 200 member organisations for their support, adding “I’m thrilled to represent Haemochromatosis UK in the Genetic Alliance’s wider work, through their board of trustees. If we collaborate, we will have a louder voice amongst NHS policy-makers, our elected representatives and industry supporters. It’s important that we give a clear voice to our communities, who would otherwise be neglected or under-represented. By working together, we are stronger.”