Rare Disease Group
- To promote the RaDaR registration of patients affected by Monoclonal Gammopathy of Renal Significance (MGRS)
- To develop standard operating procedures in regards to the treatment of Paraprotein Associated Kidney Diseases
- To provide better patient information and support
- To support research, in collaboration with international groups, into basic science, disease progression models and clinical trials
As the group is newly formed the first priority will be to promote RaDaR recruitment.
The MGRS RDG has links (shared members) with other international collaborative groups including:
- IKMG – International Kidney Monoclonal Gammopathy Research Group This is an international collaboration of specialists with an interest in MGRS and AL Amyloidosis. The group meet at international conferences and have developed the current definition of MGRS and diagnostic and treatment algorithms for MGRS.
- UKAN – UK Amyloidosis Network. This is a group run through the UK National Amyloidosis centre with a yearly meeting open to all. Physicians with an interest in amyloidosis can be identified through this forum and develop closer links to the national referral centre.
More information for patients diagnosed with AL amyloidosis can be found through the National Amyloidosis Centre UK NAC: www.amyloidosis.org.uk/ For patients with light chain cast nephropathy or other MGRS conditions see the following link to Myeloma UK support groups: www.myeloma.org.uk/help-and-support/support-groups
| RDG Lead(s) |
|
| Patient representative(s) |
|
| Other members |
|
Jennifer Pinney and Guy Pratt (with support from Mark Cook and Paul Cockwell) have developed a specialist para-protein clinic in the centre for rare diseases (CfRD) at the Institute of Translational Medicine at the Queen Elizabeth Hospital, Birmingham.