About us

Purpose

The group represents the interests of Royal Free patients with primary and secondary immunodeficiency (PID and SID), hereditary angioedema (HAE) and chronic granulamotous disease (CGD).

Objectives

  1. To support, inform and represent all RFH patients with Primary Immunodeficiency and to raise funds to facilitate these objectives.
  2. To raise funds for research into PID at the RFH. 

Management Board

  • Jose Drabwell (Chair)
  • David Evans (vice- Chair)
  • Drew Tyne
  • Kit Sandford
  • Suranjith Seneviratne ( Assisted by David Webster -medical advisor)
  • Caroline Richmond, PID and SID group manager
  • Chanell Pritchard (secretary)  

Constitution

View the constitution and rules of the Royal Free Charity PID patients SPF management committee. Constitution - PDF

History

The Royal Free Charity encourages and assists their patients to form ‘support groups’ to help protect their interests and provide information to the Royal Free Hospital Foundation Trust on how to improve their care. In the autumn of 2012 a small group of PID patients set up a Management Committee (MC) to develop the ‘Royal Free PID Support Group’ which operates under the governance and financial control of the RFH Charity. Patients are now being encouraged to join the Group and by the summer of 2013 it should be possible to hold formal elections for membership of the MC.

Board minutes

The Royal Free PID patients' support is run by a board made of up its members. Hospital staff attend as observers and advisers. For transparency, the minutes of Board meeting are posted below.