Vacancy for Lead Clinician of the Cystinosis Rare Disease Group

A real opportunity to lead an enthusiastic group of clinicians in partnership with patients and Industry to support improvement in patient service, clinical care and research of an ultra-rare disease at an exciting time of drug development and change in service model.

After over five highly successful years in the role, Dr Graham Lipkin is stepping down as lead for the Cystinosis Rare Disease Group and a replacement is now being sought.

Candidates should be UK-based Nephrologists with a specific interest and expertise in Cystinosis. It is expected that the Rare Disease Groups are members of the Renal Association.

The main responsibilities of the role are as follows:

  • To support the recruitment of Cystinosis patients into the RaDaR rare disease registry
  • To promote research into Cystinosis, both in the UK and overseas, in collaboration with patient support groups, academic researchers and commercial companies
  • To maintain the condition specific pages on the patient and clinician information website RareRenal, in accordance with the Information Standard accreditation and with the support of the RaDaR Operational Manager
  • To abide by the terms and conditions set out in the Rare Disease Group Standard Operating Policy  – available on request from the RaDaR Operational Manager as below
  • To organise and promote Patient and Clinician Information events to facilitate patient involvement and researcher engagement

Please send expressions of interest to Melanie Dillon, RaDaR Operational Manager (Melanie.Dillon@RenalRegistry.nhs.uk) by Friday 27th October.