About The UK Mastocytosis Support Group
We are a registered charity supporting people with mast cell diseases and their families. The group was founded in 2004 by Irene Wilson and became a registered charity in 2013.
We support patients and parents of patients through our private web forums, by holding patient conferences and occasional regional meet-ups, and by providing one-on-one support when needed. Over the past fifteen years, hundreds of patients have supported each other and shared their experiences through our email group (soon to be superseded by our GDPR-compliant web forum).
We help patients (and parents) learn to understand the conditions and help them to advocate for their needs in healthcare, in employment and in school. We provide educational materials for patients, families and their communities.UK Masto Support
The UK Mastocytosis Support Group advocates for the needs of people with mast cell diseases in the UK’s health systems, interacting with the MHRA (pharmaceutical regulators) NICE (who do cost/benefit analysis on medications) and the NHS, as well as international regulatory bodies to help ensure the views of patients are taken into account as much as possible when decisions are made about care and about access to medicines. We also attend meetings of medical professionals to provide educational materials that enhance understanding of these conditions.UK Masto Advocacy
We seek to promote research into mast cell diseases. We communicate to researchers about the experiences of patients and what matters most to them. We make small grants to researchers to encourage them to work in the field, promote connections among researchers with overlapping interests, interact with pharmaceutical companies to ensure they understand the needs of patients, and are working with a researcher to develop a UK registry of patients with mast cell disease.UK Masto Research
Our members are our most valuable asset. With diseases that are rare and/or under diagnosed, the knowledge patients have of what works is a vital tool for improving the lives of others who are newly diagnosed or facing new challenges. We thank everyone who engages in our forums and attends our conferences for the help they give to others.
Our group is led by a growing group of volunteers, including our forum moderators, fundraisers, web and social media gurus, and trustees. If you have time and skills that can enhance our work, email us to see how you can help!
Irene Wilson – Honorary Chair and Trustee, and Chair of Support Committee
Irene founded the group in May 2004 and led it until October 2015. Her drive, guidance and patience have helped hundreds of patients learn to live well in spite of their mast cell disease. Irene has recently moved from the outskirts of Glasgow to the Scottish coast with her husband, Stuart. She has returned as a trustee in 2018 to oversee patient support via our new forum.
Jess Hobart – Chair and Trustee
Jess has been learning from and helping people with mast cell diseases since 1995 when she first found other patients on the internet, several years after she was diagnosed with indolent systemic Mastocytosis. In the late 1990s she served as a co-chair and trustee of The Mastocytosis Society, in her native United States. In 2008 Jess moved with her husband and two sons to London and in 2014 began volunteering for The UK Mastocytosis Support Group. She holds masters degrees in public health and public policy and takes the lead with the group’s research and advocacy branches.
Andrew Dugdale – Trustee
Andrew is in the process of retiring from his business of over 18 years due to failing health as a result of the combined effects of his aggressive systemic Mastocytosis and his cytoreductive treatment. Andrew’s skills lie in business management and strategy, and his role in the society is as a mentor/sounding board for the trustees, as well as being the trustee responsible for data protection.
Randy Perkins-Smart – Trustee
Randy helps with the charity’s technical needs and social media. He is an accomplished Microsoft Certified Technology Specialist / IT Professional, BCS Chartered IT Professional and Prince 2 Practitioner specialising in Office 365 / SharePoint and web-based information systems.
Joanna Lord – Financial Controller
Joanna worked as a chartered accountant in Australia before moving to the UK and oversees our day to day financial operations. She is active in local theatre productions when she’s not volunteering for the charity.