See the latest edition of Rare Revolution magazine for Suzie’s story about life with PNH (page 28). https://edition.pagesuite-professional.co.uk/html5/reader/production/default.aspx?pubname=&edid=5e15642b-f320-410c-afd5-200f9f8f7b1e
This blog was written for the Protect ERNs website. Please sign up here to support the campaign. PRESERVATION OF THE UK IN ERNs – WHAT COLLABORATION MEANS FOR PATIENTS AFFECTED BY RARE BLOOD DISORDERS Maria Piggin, Chair of PNH Support, and Sophie Wintrich, CEO of MDS UK Maria Piggin and Sophie Wintrich hold voluntary positions as European
“This approval is based on comprehensive results from two Phase 3 studies, which were recently published in Blood.In these studies, which included 441 patients who had either never been treated with a complement inhibitor before, or who had been stable on SOLIRIS, the efficacy of ULTOMIRIS administered every eight weeks was non-inferior to the efficacy
For the last two years PNH Support has printed Christmas Cards using artwork generously donated by a patient’s sister. We have regrettably decided not to continue to print these in future however we still have Christmas cards left over from the last 2 years if anyone would like to buy some (pictures above of 2
Genetic Alliance UK still have spaces available in upcoming focus groups for their research project CONCORD (CoOrdiNated Care Of Rare Disease). They are currently recruiting for focus groups for rare disease patients, carers and healthcare professionals. These focus groups are crucial to help the researchers understand the needs and concerns of both patients and healthcare
Now in its second edition, The Guide to Living Well with PNH contains patient quotes, expert tips, and tools to help patients and caregivers not only better manage this condition, but thrive with it. The Canadian Association of PNH Patients has updated this “go-to” resource to include information on the latest news in PNH research,
New research study investigating how care should be co-ordinated for rare conditions Are you 18 or over and a patient with a rare or undiagnosed condition? Are you the parent or carer of a patient with a rare or undiagnosed condition? Would you like to share your experiences of managing a rare condition in an interview? CO-ordiNated
WHEN Thursday, 18 October 10:00-15:00 WHERE Holiday Inn, Cardiff City Centre, Castle Street, Cardiff, CF10 1XD This free event, hosted by Genetic Alliance UK and Wales Gene Park, will include talks from patients and researchers on their experiences of rare and genetic conditions and a workshop from Professor Fiona Verity, Swansea University, on using social
When: Wednesday 10th OctoberWhere: University of Strathclyde There are just 12 days until 70+ researchers, clinicians, patients, patient groups, life science professionals, students and more join us at our Glasgow Rare Disease Showcase! There are still plenty of tickets left if you want to make the most of this fantastic networking opportunity. Register here!
Register for CRDN's #RAREfest2018It's only September and the Cambridge Rare Disease Network's (CRDN) RAREfestalready has a fantastic line-up of speakers and activities! The event is taking place at the Cambridge Guildhall, 30th November to 1st December. Why not help them spread the word beyond the rare community and invite some friends along?