Tuberous Sclerosis Big Day 2nd November 2019


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:

www.tuberous-sclerosis.org/new-tsa-news/big-day-2019

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

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

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