Maria Piggin talks to Rare Revolution about PNH and PNH Support, a community of people living with PNH (and their family members) in England, Wales and Northern Ireland.
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
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 This blog […]
“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 […]
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 […]
