West Cumberland Hospital became the 100th site to open to recruitment for the RaDaR rare disease registry in April 2019.
Author: Melanie
Fabry Diagnosis Algorithm
The Fabry Rare Disease Group have developed a Diagnosis Algorithm to help with the identification of new patients.
RSM meeting – 8th May
The Royal Society of Medicine (RSM) are hosting an event on Rare diseases and the kidney on the 8th May 2019 at Salford University, Media City Campus. This high quality meeting will bring experts from a wide variety of rare disease areas together to present the latest updates and developments in rare diseases.
The meeting will be of relevance to medical students, trainees and consultants as it provides a unique opportunity to keep up to date with latest clinical developments, opportunities and research being conducted and MDT and patient partnerships for these conditions.
Topics include:
- Expert overview of a number of rare diseases affecting the kidney
- Best medical management and potential treatments
- Latest research, developments and opportunities for future research using the RaDaR network
GDPR Update
To ensure that RaDaR is compliant with the new General Data Protection Regulations, which came into force on May 25th 2018, two Privacy Statements have been produced to cover both Rare Renal and RaDaR. The documents detail what data is collected from patients and how it stored, linked and accessed.
RaDaR Newsletter Spring 2019
In celebration of World Kidney Day the latest edition of the RaDaR rare disease registry newsletter contains important information about our NIHR Portfolio extension and details of forthcoming patient and clinician information events.
World Kidney Day 2019
Help us bring together millions of people across the world and unite with one powerful voice for kidney health awareness.
World Kidney Day in the UK is led by the Kidney Charities Together group (Kidney Care UK, Kidney Research UK, NKF (Kidney Patients UK) and the PKD Charity). Help us bring together millions of people across the world and unite with one powerful voice for kidney health awareness.
Over 180 support packs have already been sent out to renal and transplant units as well as individuals and patient groups supporting the day by organising an awareness activity or event.
What are you planning, following the 2019 global theme of Kidney Health for Everyone Everywhere?
Ideas for activities and downloadable resources are available from www.worldkidneyday.co.uk and you can apply for a support pack www.worldkidneyday.co.uk/order-support-pack/ but don’t delay – stocks are running low
Follow us on Facebook, Twitter or Instagram and share our daily Kidney Facts (from 7-14 March). You can also add a Facebook frameorTwibbon to your profile picture to show your support.
Vasculitis Education Day
We are pleased to announce the inaugural UK and Ireland Rare Disease Group Vasculitis Education Day will be held on Thursday May 16th 2019 at Salford Royal Foundation Trust.
The day is predominantly aimed at renal and rheumatology trainees and junior consultants but is open to any interested health care professional. This event is free of charge to attend and CPD event approval has been applied for.
To reserve a place please email hugh.cahill@addenbrookes.nhs.uk by Thursday 18th April.
ADPKD Patient Information Day – Saturday 30th March, Aintree
The PKD Charity will be hosting the next ADPKD Patient Information Day on Saturday, 30 March 2019 from 10:00am – 16:00pm at Aintree University Hospital Lower Lane, Liverpool. L9 7AL
The event is free to attend and will include talks on:
- The Basics of ADPKD
- Genetics
- Diet and Lifestyle
- Research
- Transplants
Lunch and refreshments included
To register please visit Eventbrite or email info@pkdcharity.org
Extension of RaDaR’s Portfolio support
Thanks to the generous support of Kidney Research UK, RaDaR will maintain it’s presence on the NIHR’s Research Portfolio until 31/03/2020. This ensures that recruiting sites will continue to receive financial support for every patient that they recruit to the rare disease registry.
Retroperitoneal Fibrosis Patient Involvement event – Saturday 2nd March
The Retroperitoneal Fibrosis Rare Disease Group are hosting a Public and Patient Involvement event on Saturday 2nd March in London in order to work together with patients and their carers to learn more about this rare condition and improve treatment.
