2019 RaDaR meeting

On Monday 2nd September 2019 a joint patient and clinician event was held at in London to discuss current and future research around the RaDaR rare disease registry, as well as ways to boost patient engagement in research. 

The agenda, a report from the day and pdfs of the presentations can be found below.

RaDaR Meeting Agenda

RaDaR Meeting Report

Presentations

Current status of RaDaR – Melanie Dillon, RaDaR Operations Officer

Ethics and re-consent – Dr Kate Bramham, Rare Diseases Committee Deputy

ADPKD – Dr Regada El-Damanawi, Research Fellow 

NephroS/NURTuRE – Prof Moin Saleem, Paediatric Nephrologist, Bristol

PREDICT – Dr Kate Bramham Rare Diseases Committee Deputy Chair

ERKNet – Tess Harris, PKD Charity

NIHR BioResource – Dr Kathy Stirrups, Head of Sample Management

NCARDRS Mary Bythell, Head of Rare Disease Registration

NHS Digital – Jackie Shears, Associate Director, Data Acquisitions

Patient Council and information resources – Fiona Loud, Kidney Care Policy Director

Kidney Research UK support – Pete Storey, KRUK Rare Disease Programme Lead

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

Poster

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.

RaDaR Newsletter Spring 2019

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.

Programme

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

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.