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
The draft of a new Renal Association Clinical Practice Guideline on Monitoring children and young people with, or at risk of developing Autosomal Dominant Polycystic Kidney Disease (ADPKD) is now available for review.
Please send any comments – listing page/guideline number as appropriate – to Melanie.Dillon@renalregistry.nhs.uk by Wednesday 10th October.
The latest issue of the RaDaR Newsletter contains information about our compliance with the new General Data Protection Regulations (GDPR) and forthcoming events for HNF1B and ADPKD patients.
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
- New therapies
Registration Information: Online registration https://adpkdseptember2018.eventbrite.co.uk or contact Esther Wright at firstname.lastname@example.org
There is no charge to attend but a donation is always welcome. Refreshments and lunch included.
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
- 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
The latest issue of the RaDaR Newsletter contains information about the recent NIHR Portfolio extension and details of up-coming events.
The Renal Association invites expressions of interest from its members for the position of Chair of the Rare Diseases Committee detailed below. The deadline for submission of a formal expression of interest is 13 May 2018.
Role Title: Chair of the Rare Diseases Committee (RDC)
Appointed by an Appointments Panel
Reporting To: Academic Vice President
Responsible To: Renal Association Trustees via the Renal Information Governance Board (RIGB)
Tenure: Three years
Start Date: June 2018 – Post Annual General Meeting
The chair of the Rare Disease Committee (RDC) has a key role in the development and delivery of the Rare Renal Disease strategy of the Renal Association (RA). They are responsible for all aspects of the Committee’s activity as well as oversight of the 25 Rare Disease Groups (RDGs). The Chair and committee work closely with and have strategic input into the operation management and development of the UK Registry for Rare Kidney Diseases (RaDaR). RaDaR is funded through capitation from each Renal Unit. The Chair will be the professional and public face of the RAs rare disease initiatives. The role of Chair of the RDC is supported by an Operations Manager, employed by the UK Renal Registry.
Development of the opportunities created by the RDC in establishing RaDaR is seen as a key strategic aim of the Renal Association.
This is an exciting opportunity to leverage clinical service and research opportunities offered by the large cohorts of patients with rare kidney diseases already collected by RaDaR. The research opportunities could be achieved by analysis of current cohort data, ‘Big data’ linkage and investigator led or pharma input into projects.
The role comprises 2 key areas of activity:
- Strategic input into the operational development of RaDaR
- Chairing the Rare Disease Committee and supporting clinical and research output from the RDGs
Responsibilities of the Role
- To prepare an annual business plan for the RDC
- To prepare written reports of the business of the RDC and delivery of the annual workplan for the Academic Affairs Board and Executive Committee
- To work with the AVP to encourage a culture of active research through each RDG.
- To act as an advocate for research, clinical progress and patient empowerment in rare kidney diseases both within the RA and with relevant external individuals and organisations
- To act as a conduit for exchange of ideas and innovation between the RDGs, other relevant individuals and organisations both within the Association and externally
- To convene and chair meetings of the RDC at least twice a year (be responsible for producing an Agenda and approving minutes) and maintain committee business using e-mail and telephone communications between meetings
- To support the Rare Disease Groups by monthly communications and regular engagement with RDG chairs and committees
- To attend the RA Executive Committee RIGB and Academic Affairs Board meetings (usually by TC).
- Ensure the RDGs provide as a minimum an annual report, patient information and evidence of activity through annual reports.
- To champion improvements in training in rare disease and development of service standards for rare diseases
- To ensure the Committee’s website area is kept up to date with information about the current Committee membership, minutes of meetings and other relevant documents
- To keep the membership of the RA informed of the Committee’s activities through the website, monthly news, and other communications channels.
- Active member of the Renal Association in good standing
- An interest in rare renal diseases
- Excellent communication skills
- Leadership experience.
- Track record of excellence in delivering clinical services for rare renal disease
- Membership of one of the rare disease groups
- Research experience in a rare renal disease
- Experience in patient and public involvement
- Experience in rare disease education and training.
For those considering this position we invite you to informally discuss it further with one of the following:
Please direct all formal expressions of interest in writing directly to the Renal Association Secretariat, via email email@example.com no later than the deadline of Sunday 13 May 2018. Candidates are asked to provide a maximum of a 1 side of A4 letter of application and a brief CV.
The Renal Association recognises and actively promotes the benefits of diversity. We welcome applications from all backgrounds, regardless of race, gender, disability, age, sexual orientation, religion or belief.