Genetic Alliance UK

🚨 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

The newly formed #RareCare team are recruiting! Join the team as a Rare Care Research Advisory Group Lived Experience Member. Who can apply? - Are you a person or caregiver with lived experience of a rare condition? - Do you have experience in patient-centred research? - Have you taken part in a clinical trial or research study? Or supported someone who has? - Have you helped design or review research activities or healthcare services? - Have you been involved in Patient and Public Involvement, Engagement and Participation (PPIEP) activities? - Have you been part of a research advisory or service group? The newly formed #RareCare Team are recruiting 2 lived experience people to join their Research Advisory Group (RAG) for a 24-month NIHR (National Institute for Health and Care Research) funded project to measure the impact of England's #RareDiseases Action Plans for those living with rare conditions and to advise on improvement. This paid position involves 6-8 online meetings beginning in July 2024, and some reading and reviewing materials at home. 🔎 Learn about the RareCare project - https://ow.ly/uZff50SfiKy 🧾 View the role description - https://ow.ly/ayAN50SfiL0 ✔️ Apply to be considered for the role - https://ow.ly/43c650SfiLu Good luck

Yesterday we joined our member organisation, ACTA2 Alliance, to raise awareness of Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS). To familiarise yourself with the condition, take a look at the ten facts below

Genetic Alliance UK is seeking a new Chief Executive We’re looking for a Chief Executive to deliver our ambitious new strategy and to inspire and lead Genetic Alliance UK’s talented and experienced team following a period of significant change. We are an alliance of over 230 charities and support groups whose collaborative aim is to work together to improve the lives of 3.5 million people in the UK affected by rare or genetic conditions. We run 2 long standing projects, Rare Disease UK and SWAN UK (syndromes without a name). You can find out more about our work at https://ow.ly/eywP50SeetR. We are looking for candidates with a personal or professional passion for driving improvements in the lives of people affected by rare or genetic conditions, who can bring relevant expertise and diverse perspectives to shape our work. You will be a credible senior leader who listens and learns from the views of members, supporters and partners, and builds on the high profile and strong reputation of Genetic Alliance UK. We are seeking to complement the skills of our senior team by recruiting a Chief Executive with expertise in business development and income generation, governance, strategic delivery, impact measurement, operational management, business planning and financial management. It’s a broad role and we’re interested to hear from a range of candidates with different experiences. As Chief Executive at Genetic Alliance UK, you will have the opportunity to work in a cutting-edge environment, developing policy and research and working with leaders across government, science and industry. You will be able to bring positive benefit to countless lives. 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. We want to hear from candidates from all walks of life, and we welcome applications from people with lived experience of rare or genetic conditions either directly or through a family member. People from minority ethnic backgrounds and men are currently under-represented on our staff, and we would welcome applicants who can bring either or both of these perspectives to our work. For an informal conversation about the role, please contact current Chief Executive Louise Fish (louise.fish@geneticalliance.org.uk) and/or Chair Elizabeth Porterfield (chair@geneticalliance.org.uk). Deadline for applications: 17.00 on Monday 1 July 2024 You can find the application pack including a job description and details of how to apply at: https://ow.ly/Wz2r50SeetS. First round interviews will take place by Zoom on Wednesday 10 and Thursday 11 July 2024. We will interview a maximum of 2 final candidates face-to-face in London on Wednesday 17 July 2024.