Each year we hold elections to appoint new trustees. If you are interested in
becoming a trustee please have a look at the information provided;
Call for nominations, Information pack, Role description
and call us on 020 7939 0780 or complete these forms;
Trustee's undertaking & conflicts of interest, Nomination form.
The Society’s board of trustees meets six times each year to give strategic direction to our work. Trustees are responsible for governing our organisation, and as a small charity, they make a real difference to what we do.
Trustees are volunteers who draw on personal experience of living with a bleeding disorder, as well as wider knowledge and expertise in e.g. fundraising, finance, communication, advocacy, understanding of the NHS or government relations.
Our new Chair – Barry Flynn
We are pleased to announce that Barry Flynn has succeeded Bernard Manson as Chair of the Society.
Barry brings a wealth of professional and personal experience to the charity as we begin our 66th year of helping people with a bleeding disorder and their families to live life well.
As well as extensive skills and expertise in the corporate sector as a leader, manager, coach and mentor, he has first-hand experience of living with severe haemophilia and the legacy of contaminated blood. Read more about Barry.
Lisa is a haemophilia carrier: she has a son who has severe haemophilia A and a daughter who is also a carrier. She brings more than 25 years of professional experience as an IT consultant, currently managing supplier and client relationships for one of the ‘big four’ accountancy firms.
An avid supporter of the Society, raising funds through a 10km run in 2015 and Trek Iceland in 2014, Lisa is passionate about seeking justice for those affected by the contaminated blood tragedy, future enhancements / developments in treatment, and achieving more consistent care and support for everyone with a bleeding disorder, regardless of their age, location or haemophilia centre.
Helen has volunteered for The Haemophilia Society both locally in Yorkshire and nationally over the last 15 years and has run online support groups for both women with bleeding disorders and people with von Willebrands since the 90’s. She also volunteers locally in the NHS in a patient participation capacity and had worked with a local disability rights charity. She is a passionate, patient advocate and worked in the NHS for 12 years. She is also an accredited tutor for the Expert Patients Programme, a self-management programme for people with long-term health conditions. Helen has von Willebrands type 3 (severe) and has cleared Hepatitis C.
Liz de Freitas
Liz’s husband of 25 years has severe haemophilia A: ‘I’ve seen first-hand how he’s had to deal with huge challenges. The Haemophilia Society has always supported us and our three children, and I wanted to give something back.’
Liz brings valuable expertise and insight into organisation strategy, development and operations from her career working as a business advisor (at Ernst & Young) and in a variety of operational and business development roles. She is looking forward to giving her time and expertise to The Society as a trustee, helping to shape our services and support as we look to the future.
Dr Kate Khair
Kate is the consultant nurse for haemophilia and related bleeding disorders at Great Ormond Street Hospital, where she has worked for 20 years. Kate is also founder of Sixvibe, an online community for young people with bleeding disorders, chair of the Haemophilia Nurses Association, vice-chair of the World Federation of Hemophilia's nurses committee and a trustee of Haemnet, an online educational forum for healthcare professionals. Kate wrote her PhD thesis on the experiences of children with haemophilia, and much of her 'spare' time is spent working through the WFH to improve care and treatment in developing countries.
Andy Martin - Deputy Chair
Since retiring, Andy felt the time was right to ‘give something back’ to the Society, helping those who need support, and as a ‘thank you’ for all their campaigning on contaminated blood over the years. Andy has mild haemophilia and contracted Hepatitis C through infected blood many years ago.
Simon Mower - Treasurer
Simon is a qualified treasurer with fundraising experience, bringing financial expertise through his day job at financial services company KPMG. Simon’s focus is on ensuring stability and developing accessible services for the Society’s members. He’s also into judo.
Jamie is director of strategy at a leading health economics consultancy and a senior lecturer of health economics at the University of Chester.
He also has severe haemophilia A and is deeply passionate about achieving and preserving optimal levels of care for people within his community. He is our nominated trustee on the board of the Macfarlane Trust, which assists people infected with HIV through contaminated blood.
During his first three years on the Board, Jamie led the largest ever study into the burden of severe haemophilia, involving 1,285 patients across 5 European countries.
Jamie is also the health economics lead on the European Haemophilia Consortium’s data and economics committee, and a steering committee member of the European Patients Forum, advising hundreds of charities on patient care improvements and policy development.
Collette brings to the board both professional and personal experience of bleeding disorders. A carrier of haemophilia A, Collette has three adult children: a carrier daughter and two sons, one of whom has severe haemophilia. Her father died many years ago after being infected with HIV through contaminated blood.
Collette also works as a nurse, specialising in haemophilia research, and is now lead research nurse for haemophilia at St. Thomas’ Hospital, striving to improve life for people with bleeding disorders through new therapies and improved treatment options.
‘Throughout my life, the Haemophilia Society has always been there and I’ve always encouraged our whole family to join in. Now’s the time for me to offer something in return.’
A retired health and social care consultant, with experience of working with and managing charities, Barbara originally worked as a nurse, midwife and health visitor, including as a volunteer in Cambodia. Barbara also brings insight into the difficulties faced by many of the families the Society supports: her husband, who died in 1993, had haemophilia.
The youngest of three brothers, all with severe haemophilia A, Clive brings legal expertise to the Board, as a qualified barrister who has practiced criminal law for 11 years.
Clive is passionate about raising awareness within the bleeding disorder community of what is possible: ‘I don’t believe Haemophilia should limit what people do’.
Despite arthritis in his ankle, Clive keeps very active, having run the Brighton Marathon in aid of Great Ormond Street, competed in triathlons and completed two Ironman challenges in the last two years!
Trustees are elected by members at the Society’s annual general meeting, or may be co-opted for their specific expertise or experience. Elected trustees serve a maximum six years and after a one year gap, can serve for a further three years.
To find out more about becoming a trustee, please contact Liz Carroll, Chief Executive, by phone 0207 949 0780 or email firstname.lastname@example.org.