The Tuberous Sclerosis Association’s (TSA) Big Day 2019 will take place on Saturday 2nd November at the Nottingham Belfry Hotel.
Big Day is an opportunity for everyone in the TSC community to come together – from people living with TSC and their loved ones to clinicians and academics – to share experiences, get to know each other and hear about all-things TSC. You can expect to:
- Be in an environment where people understand the impact that TSC can have on lives, with significant time allowed for networking
- Discuss a range of topics, all focused on TSC, from external experts based around the UK
- Have the opportunity to meet and get to know individuals and families affected by TSC
- Take part in different workshops and talks, all specially designed to help the TSC community understand and access support, services and care
For more information and booking details please visit:
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
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
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
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
- Diet and Lifestyle
Lunch and refreshments included
To register please visit Eventbrite or email email@example.com
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.
RPF PPI Event
The Fibromuscular Dysplasia (FMD) Rare Disease Group have produced a update on their recent patient information day in Salford and a review of current literature.
FMD group update
The latest issue of the RaDaR Newsletter contains a summary of the year’s achievements and information about patient events in 2019.
UK and Ireland’s First Patient Information Day on Fibromuscular Dysplasia (FMD) will take place on Saturday 19th January 2019 at Salford Royal Hospital
The event is free to attend. To register please contact firstname.lastname@example.org or @FmdsUk.
A summary and photos of the recent ADTKD/UMOD Patient Information Day can be found below.
ADTKD/UMOD patient information day summary