Immunodeficiency UK

Monday marked a crucial step in our ongoing advocacy for people living with immunodeficiencies. We joined NHS England, MPs, peers, and fellow patient organisations at the Houses of Parliament to discuss the vital UK plasma programme that will transform treatment options for our community. We're particularly grateful to Claire Hazelgrove, MP for Filton and Bradley Stoke, for sponsoring this event. Her support helps us to amplify the voices of those living with immunodeficiencies and ensures their needs remain at the forefront of healthcare policy.

I'm Fay, the Digital Communications, Marketing and Fundraising Assistant at Immunodeficiency UK, and I've got some exciting news to share! 🎉 Recently, I took a big step and signed up for the UK Blood Stem Cell Registry. Why? Because I believe in the power of small actions to make a huge difference. 💪 Working at Immunodeficiency UK has opened my eyes to the critical need for stem cell donors. For some people with immunodeficiency, a stem cell transplant is their best hope for survival. By joining the registry, I might one day have the chance to save a life. I understood the critical need for increased diversity in the stem cell donor pool. As someone of mixed British and Jamaican heritage, I recognised that my participation could help address the underrepresentation of minority backgrounds on the register. It was quick, easy, and painless to sign up. If you are aged between 17 and 55 years and in general good health, I encourage you to consider joining too. Together, we can give hope to those waiting for a match. Learn more about becoming a donor at: https://lnkd.in/gCFwWWYK DKMS UK #StemCellDonor #SaveALife #ImmunodeficiencyUK

Your company can make a real difference in the lives of those affected by immunodeficiency. Our corporate partnerships offer various ways to support our cause, from sponsorship opportunities to employee engagement programs. Learn how your business can demonstrate social responsibility while helping a vital cause. Visit our 'Corporate Support' page to explore partnership options and start making an impact today. https://lnkd.in/g4fWHraF

Immunodeficiency UK is seeking at least two exceptional individuals to join our Board of Trustees and help steer the growth of our impactful patient organisation over the coming years.   We are a small charity supporting individuals and families affected by primary or secondary immunodeficiency in the UK. Our mission is to provide support, advocate for patients, and encourage research into these often-misunderstood conditions.   To strengthen our board, we are particularly interested in candidates with expertise in one or more of the following areas:   - Living with or caring for someone with an immunodeficiency disorder - Experience within the charity sector  - Organisational governance - Risk management   As a Trustee, you will ensure robust governance and oversight of our services. Board meetings are currently held online every two months on Monday evenings. This is a voluntary role, but reasonable expenses are covered. To apply, please send a cover letter outlining your motivations and relevant experience along with your CV to chair@immunodeficiencyuk.org by 12th June 2024. For an informal discussion about the roles, contact our CEO Dr. Susan Walsh at hello@immunodeficiencyuk.org. Help us ensure no one faces an immunodeficiency journey alone. Join our dedicated team and be part of improving lives today. #CharityTrustee #VolunteerRole #PatientOrganisation #RareDiseaseUK

Thanks so much for fundraising to support us. It is so appreciated and will be so vital in our work supporting those with immunodeficiency.

We are proud to have taken part in this amazing event. Great to see so many MPs getting behind the importance of plasma for those with an immunodeficiency.

Our CEO Dr Susan Walsh and IG recipient Margaret talking to MP’s about the importance of IG for people with immunodeficiency.

We're at the House of Commons today with @NHSBT, advocating for patients with immunodeficiencies. We're part of a crucial roundtable discussion on the urgent need for increased plasma donations. Help us raise awareness by sharing this post! #immunodeficiencies #plasmadonation #advocacy

The Prescription Charges Coalition, which represents over 50 charities and organisations, including Immunodeficiency UK, is calling on the UK government to freeze the prescription charge in England in 2024 and 2025.    Working age people living with long-term conditions like primary immunodeficiency, Parkinson’s, Multiple Sclerosis, arthritis, asthma, cystic fibrosis, motor neurone disease and HIV, who require multiple medications a day, cannot apply for an exemption and we’re worried that the increased cost will force people to choose between eating, heating and taking their vital medication.    Add your name to the open letter and let the government know they need to #FreezeTheCharge.  Link: https://lnkd.in/eAVTQaKU