MPGN/DDD Support Group was founded on 22nd June 2013 and became a registered charity on 14th July 2014. We are registered with the Charity Commission for England and Wales, and our number is 1157821. MPGN/DDD Support Group is run by patients, their families and carers, all of whom are volunteers.
Our objectives are:
- To provide information and advice to members
- Represent all who have these diseases
- Raise the profile of these rare diseases amongst the general public, medical practitioners, government and all relevant organisations/companies
- Work towards improving accessibility of treatments and drugs for patients
This website will help us to achieve our aims by providing useful information, news and advice, raising awareness of these diseases and being an effective instrument of future campaigns.
N.B. Please be aware that we are not a medical website and cannot offer specific medical advice to individuals
Our current trustees and officers are:
- Sarah Whittall (Secretary)
- Su Brimble (Treasurer)
- Steve Richardson (Chair)
- Kim Jessup (Patient Voice)
- Our medical advisors are:
- Dr Sally Johnson, Consultant Paediatric Nephrologist in Newcastle-Upon-Tyne. Dr Johnson is chief investigator for the National Study of MPGN and principal investigator for a number of multicentre clinical research trials.
- Dr Stephen Marks, Consultant Paediatric Nephrologist and Clinical Lead for renal transplantation at Great Ormond Street Hospital (GOSH) & Chair of MPGN/DDD/C3G Rare Disease Group of RADAR.