PNH Support celebrates its 10 Year Anniversary!
PNH Support 10th Anniversary Event – Saturday 11 October 2025, The Wesley Hotel, London
By Daisy Evans
PNH Support marked its 10th anniversary in style with a fantastic day of learning, connection, and celebration at The Wesley Hotel in London. The welcoming, informal set-up created the perfect environment for conversation — with tables grouped by region, it was easy to meet and chat with others living nearby and share experiences throughout the day.
We began with a review of the last 10 years of PNH Support, led by Maria and the board, who reflected on the charity’s incredible journey so far. It was inspiring to hear how much has been achieved in a decade with very little funding and such a small team. The charity has influenced policy and secured seats at very big tables at conferences across the globe to ensure patient voices are heard in the forums that can really make changes.
They talked us through the support available from the charity, including a reminder on webinars which cover such a wide variety of topics, what the Better Together Project has worked on recently, along with the successes of the Super Rare campaigns. Maria, Alex, Victoria and Jovi spoke about their own journeys and passions with the charity, and the unveiling of the new five-year strategy (2025 to 2030) showed exciting ambition for the future, with continued dedication to improving the lives of those affected by PNH and a plea for people to help volunteer their time and skills if they can.
Next, Nutritionist Erica Vtoraja gave a thoughtful session titled Maximising Your Wellbeing Through Nutrition. She explained why nutrition is so important for PNH patients to help manage symptoms, wellbeingand energy levels. For example, nutrition can support blood cell production and balance blood sugar for stable energy through the intake of important vitamins and minerals like iron, folate and vitamin B12. Advice was also given on how to support the microbiome whilst on long term antibiotics and how to manage cholesterol levels whilst on certain treatments. This advice was practical and evidence-based, empowering everyone to make small changes that can make a big difference.
Afterwards, a deeply moving and interactive workshop on Living with Fatigue and Uncertainty was led by Psychologist Jessica Ricci, which helped us to understand why uncertainty can be hard to deal with and the different psychological responses we have to it, such as avoidance, hypervigilance and rumination. These were things many of us experience but had never thought about in this way before. We also discussed the difference between tiredness and biological fatigue which was eye opening for many and validated many of our emotions and experiences. She gave us a useful way of thinking about our energy levels by thinking about what our personal battery levels were and how different things in life can boost or drain that, explaining how being aware of this and taking some time to think about it during moments of struggle can help us manage our condition, along with learning to be a little more compassionate and understanding with ourselves, which we all admitted we were not very good at! Jessica’s insight, empathy, and understanding of PNH were exceptional, and we all felt able to share our experiences and thoughts in a safe space, leaving everyone feeling both understood and uplifted.
Following that, PNH Clinical Nurse Specialists Joanna Large and Louise Arnold led a lively session calledTaking Control of Your PNH, where they shared their own journeys into PNH care, and explained how the PNH National Service operates between Leeds and London to help patients all over the country both for scheduled appointments but also the unexpected issues that can arise for us all. They provided invaluable advice on navigating the healthcare system, including the all-important topic of vaccinations. It was fascinating to hear about the new International PNH Patient Registry both in terms of the growth and scope of it. Their expertise and approachability made this an especially engaging session.
The day concluded with King’s haematologist, Dr Roochi Trikha’s talk on PNH in 2025 and Beyond. This started with a fascinating history lesson on the discovery of PNH and early treatments and how PNH is now managed and treated, including when complement inhibitors are used rather than other management techniques. With so many to choose from, Dr Trikha explained the differences between all the drug treatments and how they are chosen for each patient. Advice was given on pregnancy, contraception and menopause, as well as how PNH manifests and is treated in children. Dr Trikha finished with some updates on new and emerging treatments, global research developments, and the challenges that still lie ahead. It was great to hear more about the international registry, highlighting the importance of international collaboration and patient participation in advancing care and understanding of PNH.
Once the sessions drew to a close, attendees enjoyed a wonderful networking dinner – there was delicious food, lively conversation, and a warm, friendly atmosphere. It was a fantastic opportunity to connect with new people and strengthen the sense of community that defines PNH Support.
Overall, the day was a resounding success — informative, supportive, and deeply inspiring. Everyone left feeling more connected, informed and hopeful about the future. A huge thank you to the PNH Support team for organising such a valuable and free event, and for all they continue to do for the PNH community. It is exciting to see what the future might hold for the charity! I have just offered my services as a volunteer to PNH Support and I know they need more volunteers so would appreciate any spare time you have to undertake volunteer tasks of your choice. To chat this through or express interest please get in touch withcontact@pnhuk.org.