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Patient Led Research Hub

Our Latest News

r(20) Ketogenic Diet Therapy: surveys open!

Monday March 11, 2019

We’ve teamed up with Ring 20 Research and Support UK to investigate the use of ketogenic diet therapy (KDT) in Ring Chromosome 20 Syndrome. If you have any experience with either KDT or r(20), please consider completing these quick, anonymous online surveys. Open until 28 April. We will discuss our findings at a workshop in […]

McPin Foundation: transforming mental health research

Monday February 4, 2019

We are very pleased to add The McPin Foundation to our growing list of PLRH collaborators! McPin are leading experts in involving people with lived experience in mental health research. Their guidance and advice will be important not only to mental health proposals, but also to any proposal where physical symptoms impact mental health and […]

Rare Disease Day Cambridge Evening Lecture

Friday February 1, 2019

Join us for an evening with Cambridge researchers to talk about rare disease research! We’ll learn about new work in neuroscience, rheumatology, genomics, immunology and radiology. The PLRH and r(20) Research and Support UK will be there, too! Thursday, 28 February 2019 from 6:00-7:30pm at Addenbrooke’s Hospital, with a drinks reception to follow. All are […]

PLRH quarterly: January

Tuesday January 8, 2019

We’re starting 2019 with a new PLRH newsletter! Find the first issue here, and subscribe here if you’d like to join our mailing list. Please email us with your feedback or relevant contributions for upcoming issues.

NIHR PPI survey

Monday December 17, 2018

Have you taken part in Patient & Public Involvement (PPI) activities for the National Institute for Health Research (NIHR) this year? If so, please take 15 minutes to complete their anonymous survey to feedback on your experiences. The survey is open until 7 January 2019.  PPI activities may include: work at an NIHR centres or […]

University of Cambridge Medical Library

Monday December 17, 2018

We are pleased to announce that our literature review and early proposal development is now supported by both the University of Cambridge Medical Library, and Royal Papworth NHS Foundation Trust Outreach Librarians. This will benefit our efficiency in developing proposals, as well as add new training opportunities for patient organisations.