Over the past two years, we’ve renewed our focus on the things that matter to the charity’s members – publishing trustworthy information, stimulating medical research, raising public awareness and improving education of this, the UK’s most common genetic condition.

So we’re pleased to announce today the growth of the charity’s membership by over 40% over the past two years. Haemochromatosis UK is now the largest patient-led haemochromatosis organisation worldwide.

Neil McClements (Chief Executive) – “We love our members. They help guide our work and keep us focussed on the things that really matter to people affected by the condition - including family, friends, colleagues and employers.”

Our online support groups have also clocked-up double-digit growth over the period, with over 15,000 followers across Facebook and twitter. The charity now regularly reaches over 25,000 people monthly on social media and millions more across mass media (eg BBC Wales, Belfast Telegraph, Irish News, Derry Journal, BBC Radio 4).

The charity’s genetic testing service is screening hundreds of people, monthly. And it’s been used as a platform for developing playbooks on improved community care, genetic screening and medical research into the hotly-contested area of haemochromatosis prevalence.

We’ve recently expanded the charity’s team to scale out our Advanced Nurse Practitioner service. Each week, Diogo runs virtual/online appointments with almost two dozen members to discuss queries or concerns about their GH care.

Our RCN-accredited eLearning module has trained over 350 nurses since it was introduced in May this year. We’ve already begun work on a totally revised and updated primary care eLearning module, for accreditation by the Royal College of GPs, which will launch in the New Year. And we’re planning an expanded range of clinician education events in 2022, focussing on specialities that have historically had little attention or support (eg rheumatology, endocrinology).

We’re grateful to our members and volunteers for their continued support and encouragement. But we’re not content to rest on our laurels. We’ll be running a members’ survey before Christmas to learn more about what we’re doing well and what we can improve. Are there specific areas we should be focussing on? Let us know!

Tim Spring, Chair of the Board of Trustees welcomed the charity’s continuing growth: “The charity’s small team, supported by our amazing volunteers, continues to punch above its weight. We look forward to hearing from members in the survey what we can do to further our mission to help people affected by genetic haemochromatosis.”