HAEMOPHILIA SOCIETY (THS) - Key Persons
Job Titles:
- Youth Ambassador and Youth Board Vice Chair
Hello - I'm Alex Taylor-Rose and I have severe haemophilia A. I was diagnosed at the age of three and have been a Youth Ambassador since 2019. I'm the current vice-chair of the Youth Board, which involves me working closely with the Haemophilia Society (THS) to achieve the great events we put on for our members.
I've been able to keep on top of my bleeding disorder due to the great support from THS, along with my fantastic team at St. Georges Hospital, in Tooting.
I am a registered mental health nurse and a parent of a child who has a rare bleeding disorder. Having a child with Glanzmann's Thrombasthenia means I am aware first-hand of the impact that having a bleeding disorder has on the individual and their families.
Job Titles:
- Principal Associate in Eversheds Sutherland
Angharad oversees the day to day running of The Society's legal team. She liaises with the Infected Blood Inquiry, The Society and our members to ensure statements are taken and any questions or queries are dealt with efficiently. Angharad has considerable experience of government inquiries. As solicitor to the Jersey Care Inquiry she was responsible for the management of the legal team and monitored the progress of the preparation of evidence.
Job Titles:
- Physiotherapist
- Clinical Specialist Physiotherapist in Haemophilia and Allied Bleeding Disorders, Southern Haemophilia Network, Basingstoke
Ms Wells has worked as a physiotherapist within the NHS since 2000, specialising in musculoskeletal physiotherapy since 2002. She has worked in haemophilia and allied bleeding disorders for the Southern Haemophilia Network based in Basingstoke since 2007. Her research interests are around pain and trauma, and her current research project in collaboration with the University of Winchester is looking at Pain Memories.
Job Titles:
- Advanced Nurse Practitioner in Haemophilia and Other Haemostasis Disorders Sheffield Teaching Hospitals
Cathy has worked in the Sheffield Haemophilia & Thrombosis Centre since 2006. She is an adult nurse with a keen interest in the science of haemostasis, enjoying her clinical role and teaching both locally and on the Contemporary Care Course for people with bleeding disorders. Cathy is the Vice Chair of the World Federation of Haemophilia Nurses Committee. She is an advocate for the specialist nurses role in long term conditions and has particular interests in ageing, transition, women, education, research and service development.
When she's not at work Cathy is mum to 2 kids, wife to a very supportive husband and a long suffering Sheffield Wednesday supporter, who loves nothing more than a loud rock song and a dance in the kitchen whilst cooking.
Job Titles:
- Chairman of Trustees
- Board in 2015 As a Trustee
Clive joined the Board in 2015 as a trustee and took over as Chair in November 2018. The youngest of three brothers, all with severe haemophilia A, Clive is passionate about raising awareness within the bleeding disorder community of what is possible, saying, ‘I don't believe haemophilia should limit what people do'.
Clive brings legal expertise to the Board as a qualified barrister who has practiced criminal law for 11 years. In 2015 Clive left full-time practice and now works part-time, teaching and training solicitors and barristers, allowing him time to volunteer as a trustee.
Along with being chair of the Board, Clive also Chairs the Society's sub-committee on the Infected Blood Inquiry. Clive has been heavily involved with the Society's work on the inquiry, meeting with the Chair Sir Brian Langstaff on several occasions, attending hearings in London, Leeds and Edinburgh and working, often daily, alongside our own Inquiry lead and legal team.
In 2020, Clive was elected to the Board of Directors of the World Federation of Hemophilia and chairs the WFH Youth Committee. In 2021, Clive was appointed to the UK Rare Diseases Framework Board as a patient representative.
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 four Ironman triathlons.
Clive is a passionate patient advocate and has used his sport as a platform to speak about what he believes is achievable for people with haemophilia. He has spoken at both the World Federation of Haemophilia Conference and the European Haemophilia Consortium Conference about haemophilia and sport. Clive was formerly the Youth Ambassador to the European Haemophilia Consortium from 2018-2020.
Conan, lives with his family in County Antrim, Northern Ireland. He has a long history with us as both his parents were heavily involved with the Northern Ireland (NI) local group from when he was a child. He has many fond memories of the group's community events, including conferences, AGM's, local family days and holidaying in society caravans around the country.
Conan has been one of our trustees since 2019. He has severe haemophilia A and having been born in the early 1980's he came into contact with contaminated blood; becoming infected with hepatitis C. Fortunately, he is now clear of the virus.
"It's very important to me that we can come together across all four corners of the UK to share experiences and support each other as a community, and this especially includes everyone affected by the contaminated blood scandal," says Conan.
Conan has developed osteoarthritis in both ankles and as a result of all these experiences has a thorough knowledge of what it means to live with and manage haemophilia, along with the complications which can accompany it.
Having benefitted from the support and connections offered by the charity when he was young, Conan wants to help build bridges, foster a sense of community and give NI a voice within Haemophilia Society UK.
At home, Conan has a 12-year-old son who is really interested in his dad's condition and very helpful when Conan is feeling sore, together with Conan's partner and her little girl, they enjoy family life, socialising and down time. His interests include cars, boats, caravanning and travelling.
Professionally, Conan is from an engineering background and has held management positions in the NI water industry since 2002. His roles have provided experience in; project/energy management, strategy and policy including H&S and risk methodology, managing resources and budgets, implementing change, staff management, data analysis and briefing/presenting to senior management. All of which skills and experience we are grateful that Conan shares with us as a Trustee.
Job Titles:
- Head of Policy and Campaigns
- Head of Public Affairs and Policy
- Inquiry Lead
As Head of Policy and Campaigns, Debra is responsible for coordinating the policy position of the Society, including activities associated with the Infected Blood Statutory Inquiry.
As Head of Policy and Campaigns, Debra coordinates the work of our legal advisors, policy, research and communications, making sure that members and trustees have the information they need to follow the inquiry and fully participate.
Job Titles:
- Director of the NI Haemophilia Centre, Belfast
Dr Gary Benson graduated from Queens University Belfast in 1999 and completed his specialist training in Haematology, in Belfast and Edinburgh, ahead of taking up his current post as Director of the NI Haemophilia Centre in 2008. He has developed subspecialist clinics in the areas of carriers, obstetrics, transition and the multi professional haemophilia clinic. He remains committed to ensuring patients have access to the most up to date therapies by participating in clinical trials for novel therapeutic options for patients with bleeding disorder
Job Titles:
- Consultant in Restorative Dentistry for Barts Health NHS Trust. Clinical Lead for People With Inherited Bleeding Disorders at the Royal London Dental Hospital.
- Consultant in Restorative Dentistry Working for Barts Health NHS Trust
Dr Nanayakkara is a consultant in Restorative Dentistry working for Barts Health NHS Trust and an Honorary Senior Clinical Lecturer at QMUL School of Medicine and Dentistry. She is the Director of Dental Education at Barts Heath and Co-Director of the DClinDent programme in Prosthodontics at QMUL Institute of Dentistry.
She has a special interest in the dental management of patients with haemophilia and other inherited bleeding disorders. She has been the Clinical Lead for people with inherited bleeding disorders at the Royal London Dental Hospital since 2003 and is the Dental Lead for the North London Adult Haemophilia Network launched in 2014. Dr Nanayakkara has held World Federation of Haemophilia (WFH) Dental Committee positions as Western European Representative (2012-2014), Secretary (2014-2018) and Vice Chair (2018 - 2020 and is currently the elected Chair of the Dental Committee.
Dr Nanayakkara has a clinical interest in the use of Low-Level Laser Diode therapy to manage gingival inflammation and support haemostasis for people with severe bleeding disorders and gained a Fellowship in Lasers in Dentistry in 2018.
Job Titles:
- Centre Director, Royal London Hospital / Consultant Haematologist and Haemophilia Centre Director at Great Ormond Street Hospital for Children.
In her role at Great Ormond Street, Mary oversees the care for over 150 children with severe bleeding disorders including haemophilia, rare factor deficiencies and platelet disorders. Mary also works at the Royal Free Hospital one day a week where she has a clinic for adolescent and young adult patients.
In both centres, she works as part of a multipdisciplinary team aiming to provide effective, flexible bleeding disorders care for patients and to engage with opportunities for clinical research into evolving new treatments.
She is also the Secretary of the UKHCDO and the Chair of the Paediatric Working Party.
Dr Shapiro is a Consultant Haematologist and works entirely in the field of haemostasis and thrombosis, haemophilia and other bleeding disorders, thrombosis and anticoagulation at Oxford University Hospitals. She has particular interest in improving knowledge of aging and comorbidities in haemophilia including new innovative treatments; and in improving patient safety, with projects to optimise anticoagulation winning national awards.
She is currently Head of Department for the Oxford Haemophilia and Thrombosis and is the National Speciality Advisor for Specialised Blood Disorders.
Hello, my name is Emily, I have severe haemophilia A and I am a recent graduate from the University of Brighton. I was diagnosed with haemophilia A from birth, with the assistance of the amazing team at Great Ormond Street. Haemophilia runs throughout my family, but it has never stopped any of us from being able to do what we want to do!
After going through lots of struggles myself and seeing other females also going through similar struggles, I am very passionate about raising awareness for women with bleeding disorders. Women do bleed just like men do!
I am very excited to become a Youth Ambassador and see where this takes me. I'm looking forward to meeting other people in the bleeding disorder community at future events.
Eversheds Sutherland are experts in dealing with public inquiries in the UK.
Fiona Donoghue, HR & Office Manager, is responsible for all our human resources, administration and office management.
Gordon joined the board in November 2019 as Treasurer Trustee.
His professional background is in investment banking and aviation finance across Europe The Middle East and the US. He is married with an 18 year old daughter and is now based in London.
Gordon's father was a haemophilic who was administered infected blood resulting in the development of chronic Hepatitis C. Having experienced the care and support required for his father he is highly motivated to contribute to the growth and development of The Society.
Job Titles:
- VWD Ambassador and Youth Board Member
Hello, I'm Hannah and I have mild von Willebrand disorder type 2b. I have been an active member of the Haemophilia Society since 2015. Currently, I am on the Youth Board, the VWD working group and part of my local group in Lincolnshire and the East Midlands.
Job Titles:
- Policy and Public Affairs Manager
Job Titles:
- Talking Red Ambassador and Youth Board Member
Job Titles:
- Youth Ambassador and Youth Board Member
Job Titles:
- Events and Content Officer
Job Titles:
- Honorary Vice - President
Since becoming a state registered nurse in 1981, Dr Khair has gained a number of other professional qualifications including state registration in paediatric nursing, a master's degree in anthropology, a City and Guilds master's degree in higher levels of practice, several modules in advanced nursing and a PhD in health and social care. Kate is an advocate of the nurse's role in the multi-disciplinary team, is the past chair of the nurses committee of the WFH, a founding Trustee of Haemnet and the Editor-in-Chief of the Journal of Haemophilia Practice.
Dr Khair worked in the haemophilia centre at Great Ormond Street Hospital for Children from 1991 as a consultant nurse. In 2018 she moved to the Centre for Outcomes Research and Experience in Children's Health Illness and Disability (ORCHID) as a clinical academic to use her academic time to continue her work into outcomes research in haemophilia and bleeding disorders as well as to support PhD students in health research.
At Haemnet, Kate continues to support ongoing research in the bleeding disorders field, including working with the Haemophilia Society and supporting PhD students who are researching new treatments and pain experiences in people with haemophilia.
Job Titles:
- Medical Trustee
- Trustee / Professor Rezan Abdul Kadir
Job Titles:
- Membership & Events Manager
Job Titles:
- Trustee / Professor Rezan Abdul Kadir
Job Titles:
- Events and Office Co - Ordinator
Job Titles:
- Youth Ambassador and Youth Board Chair
Job Titles:
- Digital Marketing and Content Manager
Job Titles:
- Corporate Partner & Major Donor Fundraiser
Job Titles:
- Access and Service Improvement Ambassador