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Charity Registration No. 1064480
The ITP Support Association is a UK registered charity which aims to promote and improve the general welfare of patients, and the families of patients, with Immune Thrombocytopenia (Idiopathic Thrombocytopenic Purpura) by providing:
We are funded mainly by donations and the fundraising activities of volunteers and friends of the Association. We also receive sponsorship from companies involved in research and the treatment of ITP.
- Patient/parental/antenatal information and support.
- “Listening ear” contact with nominated volunteers
- An information pack
- A quarterly journal: The Platelet
- Easy to read booklets and factsheets on ITP and associated interests
- Advice on referrals for difficult or refractory cases
- Guidelines for schools
- Protocol for dentists of affected patients
- Annual conventions featuring leading ITP specialists.
- Internet forums, Facebook etc.
- The ITP Support Association is a wholly independent UK organisation and registered charity giving support and information for patients with ITP.
- We work with the medical profession in order to advance the knowledge and treatment of ITP by:-Funding research into ITP. (We do not fund research that involves any testing on animals)
- Occasional funding of salaries to pilot a new ITP project (eg. funding ITP nurse, registry co-ordinator, research scientist)
- Running occasional surveys and collating information
- Providing feedback on patient concerns to specialists and drug companies
- Medical seminars for haematologists, paediatricians and other health professionals
CEO - ITP SUPPORT ASSOCIATION (UNITED KINGDOM & IRELAND)
After joining the organisation in 2016, Mervyn became the Chief Executive Office in 2017 reporting to the Charities Board of Trustees.
The ITP Support Association is a UK registered charity which aims to promote and improve the general welfare of patients, and the families of patients, with Immune Thrombocytopenia (Idiopathic Thrombocytopenic Purpura).
Mervyn has expanded the reach of the organisation with a growing number of Local and Regional ITP Patient Support Groups. This has included meetings in the virtual environment which has encouraged participation from all four corners of the globe. In addition, the charity also works with our sister organisations as part of the International ITP Alliance, of which the ITPSA is a founding member along with the PDSA.
The organisation has a patient- centred focus in all that it does with the help and support of its volunteers, trustees, and medical advisors. This has been a major factor in its way of working during the Covid pandemic in making sure there is always someone to speak too when in need.
The charity has also been supporting the various UK ITP Registries (Adult, Paediatric and Pregnancy) since the outset with an average of £40,000 grant support per year.
In addition to Mervyn’s role at the UK ITP Support Association he is also the Chair of the Hertfordshire Sports Partnership (HSP) which is part of the University of Hertfordshire (Voluntary position). The partnership is funded by Sport England and is one of a network of around 40 such partnerships in England. Mervyn has been on the HSP Board for around 10 years.
Mervyn is also a member of the local council in his hometown in Bedfordshire.