Cystinuria Patient Day – Saturday March 30th 2019 – London

 

A National Cystinuria Patient Day will be taking place on Saturday March 30th 2019 at Guy’s Hospital, London

The event is free to attend for patients and relatives but registration is essential via the CystinuriaUK website.

A draft programme is now available detailing the planned talks and discussion sessions.

For more information please visit www.cystinuriauk.co.uk/patient-day

 

ADPKD Information & Support Day – 15th September 2018 – Cambridge

 

Place: Frank Lee Centre Hexagon, Addenbrooke’s Hospital, Cambridge, CB2 0SN

Time: Saturday 15th September 2018, 9.30am to 4pm

Hosted by: Professor Fiona Karet and the PKD Charity

Talks and workshops on:

  • The Basics of ADPKD
  • Genetics and Screening
  • Diet and Lifestyle
  • Research
  • Transplants
  • New therapies
  • Pain

Registration Information: Online registration https://adpkdseptember2018.eventbrite.co.uk or contact Esther Wright at info@pkdcharity.org.uk

There is no charge to attend but a donation is always welcome. Refreshments and lunch included.

New RaDaR Cohort – MGRS

 

RaDaR is now open to a new Cohort of patients – Monoclonal Gammopathy of Renal Significance (MGRS) – which covers the following conditions:  

  • AH amyloidosis
  • AHL amyloidosis
  • AL amyloidosis
  • C3 glomerulonephritis with monoclonal gammopathy
  • Crystalglobulinaemia
  • Crystal-storing histiocytosis
  • Fibrillary Glomerulonephritis
  • Immunotactoid/Glomerulonephritis with Organised Microtubular Monoclonal Immunoglobulin Deposits (GOMMID)
  • Intracapillary monoclonal IgM without cryoglobulin
  • Intraglomerular/capillary lymphoma/leukaemia
  • Light chain cast nephropathy
  • Light chain proximal tubulopathy, crystalline
  • Light chain proximal tubulopathy, non crystalline
  • Monoclonal Immunoglobulin Deposition Disease (MIDD; includes Light Chain Deposition Disease – LCDD; Heavy Chair Deposition Disease – HCDD; and Light and Heavy Chain Deposition Disease – LHCDD)
  • Proliferative glomerulonephritis with monoclonal immunoglobulin deposits – PGNMID
  • Thrombotic Microangiopathy with monoclonal gammopathy
  • Type 1 cryoglobulinaemic Glomerulonephritis
  • Unclassified MGRS

No new approvals are needed to start recruiting these patients.

A Crib Sheet of details of the conditions that are included in the MGRS cohort is available to download from https://tinyurl.com/mgrs-crib-sheet or from request via Melanie.Dillon@renalregistry.nhs.uk

New Rare Disease Committee Chair