Genetic Alliance UK

Mark Flannagan has been appointed as the new Chief Executive of Genetic Alliance UK, taking up his new role on Monday 2 September 2024. Mark has been a Board level leader in the NHS, national charities, medical bodies and the private sector across his career. For seven years, until 2017, he was Chief Executive of Beating Bowel Cancer (now merged with Bowel Cancer UK). Most recently, Mark was Director of Marketing and Communications at Alder Hey Children’s NHS Foundation Trust from 2017 until 2024. Mark has acted as a strong advocate for people with lived experience and their families throughout his career. Mark Flannagan, incoming Chief Executive, said: “I’m delighted to join Genetic Alliance UK at this vital time to drive implementation of the charity’s new five-year strategy to improve the lives of 3.5 million people in the UK affected by genetic and rare conditions. I’m excited to meet our members, partners, trustees, staff and the wider community, and incredibly ambitious about what we will achieve by working together.” Elizabeth Porterfield MBE, Chair of the Board, said: “We were thrilled with the number and high quality of the applications we received to take on this vital role, and I would like to thank everyone who put their name forward. Mark stood out due to the breadth and depth of his experience, and we are very much looking forward to him joining us in the Autumn.” During September, Mark will be supported by outgoing Chief Executive Louise Fish for a one-month period of induction and handover to provide continuity for the charity’s members, staff and trustees. Louise Fish, outgoing Chief Executive, said: “We know that planning for succession and continuity is incredibly important for small charities like ours in the rare and genetic conditions sector. I’m looking forward to supporting Mark during his first month at the charity and to watching Genetic Alliance UK thrive under his leadership in the years ahead.” #GeneticAllianceUK #RareConditions #HealthcareLeaders #CharityCEO #HealthAdvocacy #PatientAdvocacy #HealthcareStrategy #NonprofitLeaders

Need to communicate complex information in a way that’s accessible and easily understood? With Genomics England we’ve developed a ‘how to’ toolkit for creating accessible genetic and rare condition-specific information. Find the toolkit and additional resources on our website 👉 https://ow.ly/5MAo50SG3OO

🚨 One week left to apply for our Senior Policy and Research Officer role. We are seeking an inquisitive, collaborative and adaptable new member of the Genetic Alliance UK team. Our new Senior Policy and Research Officer will bring the voice of people living with genetic, rare and undiagnosed conditions to the centre of innovative research programmes and cutting-edge policy discourse. This is a key role working with both our small policy and research teams to facilitate connections with our membership and the wider genetic and rare community. For the policy team the successful candidate will ensure people living with specific conditions have a say in preimplantation genetic testing licensing, in decisions to fund innovative medicine and cover ethically complex issues such as reproductive choice and genetics and insurance. For the research team they will bring our community into the delivery of key programmes such as Rare Disease Research UK, and LifeArc’s Rare Disease Centres. Genetic Alliance UK is an equal opportunities employer. Employment and progression are based solely on merit, competence and potential, and we welcome individuals who can bring diverse perspectives and professional expertise to our team. We strive to create a workplace where everyone feels valued, respected and able to achieve their full potential. Deadline for applications is Sunday 28 July. Learn more and apply today: https://ow.ly/Uoxq50SupOt

🚨 We're hiring - Senior Policy and Research Officer! We are seeking an inquisitive, collaborative and adaptable new member of the Genetic Alliance UK team. Our new Senior Policy and Research Officer will bring the voice of people living with genetic, rare and undiagnosed conditions to the centre of innovative research programmes and cutting-edge policy discourse. This is a key role working with both our small policy and research teams to facilitate connections with our membership and the wider genetic and rare community. For the policy team the successful candidate will ensure people living with specific conditions have a say in preimplantation genetic testing licensing, in decisions to fund innovative medicine and cover ethically complex issues such as reproductive choice and genetics and insurance. For the research team they will bring our community into the delivery of key programmes such as Rare Disease Research UK, and LifeArc’s Rare Disease Centres. It is an ideal role for a graduate with early career or post-graduate experience wishing to apply their skills to have a real impact on people affected by genetic, rare and undiagnosed conditions. Deadline for applications is Sunday 28 July. Learn more and apply today: https://ow.ly/Uoxq50SupOt

Amy, our Director of Research, is taking part in the first symposium of the nucleic acid therapies research node (UPNAT) today. She is contributing to a panel discussion on how conditions will be selected for early development. You can learn more about UPNAT and Rare Disease Research UK here 👉 https://ow.ly/9CVB50SqXZm

Having better access to medicines enables the NHS to provide targeted services and support for people with genetic, rare and undiagnosed conditions. Invite your local candidate to #PLEDGE4GRU. Unsure how to find and contact your local candidate? Visit: https://ow.ly/ZNBy50So46y

Could you be our new #ChiefExecutive? If you have the drive, energy and relevant experience to lead our organisation towards achieving our ambitions for the genetic, rare and undiagnosed community then we would like to hear from you. Apply by 17:00 on Monday 1 July 2024 👉 https://ow.ly/TAtW50So2Pc

Care coordination helps to achieve safer and more effective care. Invite your community to ask their candidates in the #GeneralElection2024 to pledge support for better care coordination for people with genetic, rare and undiagnosed conditions using our toolkit. https://ow.ly/tF3I50SlrLQ #PLEDGE4GRU

Are you interested in improving co-ordination of care for people living with rare conditions? Do you have a rare condition or care for someone who has? Apply to join our advisory group 👉 https://ow.ly/SAuU50SkA96 The CONCORD2 study will examine which approaches to care co-ordination work best for people with a rare condition, parents / carers and health professionals. This will include examining costs and value for money. We will then make recommendations on how care should be co-ordinated for people with rare conditions in different settings and circumstances. We are inviting people with rare conditions and parents/carers of people with rare conditions (diagnosed or undiagnosed) to apply. We’d like to include people with good and bad experiences of care co-ordination. Deadline to register your interest is Wednesday 10 July. Apply to join our advisory group 👉 https://ow.ly/SAuU50SkA96

Congratulations Liz! 🥳 Genetic Alliance UK's Chair Elizabeth (Liz) Porterfeld has been awarded a Member of the Order of the British Empire (MBE) for services to people with rare conditions in the King's Birthday Honours List on Saturday 15 June, 2024. https://ow.ly/gQ6y50SiU2A