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

Further research opportunities

As well as taking part in the RaDaR Rare Disease Registry, we recommend that patients who are interested in research visit the NIHR’s new Be Part of Research website which allows you to search for studies by condition and/or location.

Studies that are being led or endorsed by Clinicians involved in RaDaR are advertised on the Patient Information pages for each condition.

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.

Primary Hyperoxaluria Webinar, 15th August

 

 

The Oxalosis & Hyperoxaluria Foundation (OHF) and Dicerna Pharmaceuticals invite you to participate in a webinar on Tuesday, August 15, 2017 at 16.00 hours GMT to discuss research presented by Dicerna during the 12th International Workshop on Primary Hyperoxaluria in Tenerife, Spain in July.

At the meeting, Dicerna announced the expansion of its drug development programs to encompass all forms of primary hyperoxaluria (PH). Based on new pre-clinical data presented in Tenerife, the investigational therapy DCR-PHXC has the potential to treat all forms of PH.

The webinar will provide an overview of the following research topics:

• The need for new treatment strategies for all types of PH
• The role of the LDHA gene in the pathogenesis of PH
• The DCR-PHXC preclinical data demonstrate potent, durable, and precise knockdown of LDHA in animal models of PH1, PH2 and idiopathic PH, and show a simple, direct linear relationship between LDHA inhibition and oxalate production
• Clinical development plans and timelines for DCR-PHXC

Speakers

• Kim Hollander, Executive Director, Oxalosis & Hyperoxaluria Foundation

• Dr Sally-Anne Hulton, M.D. Paediatric Nephrology, Birmingham Children’s Hospital UK

• Ralf Rosskamp, M.D. Chief Medical Officer, Dicerna Pharmaceuticals

Participate

Questions

Ask a question by emailing: julieb@ohf.org (subject line: Dicerna Webinar) by Sunday, August 13, 2017.