The UK Mastocytosis Support Group

The UK Mastocytosis Support Group is a UK-based charity dedicated to providing support, advocacy, and research funding for people affected by mast cell diseases, including mastocytosis and mast cell activation syndrome (MCAS). The organization seeks to be the patients’ voice with key stakeholders and leads world-class research into all forms of Mast Cell Disease.

The UK Mastocytosis Support Group is a registered charity supporting people with mast cell diseases and their families. It was founded in 2004 by Irene Wilson and became a registered charity in 2013. The group supports patients and parents through private web forums, patient conferences, regional meet-ups, and one-on-one support. It helps patients understand their conditions, advocate for their needs, and provides educational materials. The organization advocates for patients' needs within UK health systems, interacts with regulators and medical bodies, and promotes research into mast cell diseases. It also makes small grants to researchers, promotes connections among researchers, and interacts with pharmaceutical companies. The group is led by volunteers including trustees, forum moderators, fundraisers, and social media staff. Key personnel include Jess Hobart (Chair and Trustee), Randy Perkins-Smart (Trustee), Charlotte Lane (Trustee), Joanna Lord (Financial Controller), and Irene Wilson (Honorary Chair). The registered address is 86-90 Paul Street, London, EC2A 4NE. The charity registration number is 1201970.