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CORD Rare Diseases conference 2026

ICORD

Our Patient Advocate Katie Allen has participated in this CORD conference on the 29th and 30st of April 2026 on behalf of our organisation. Day one of the conference started with a panel addressing questions about where we have come since the announcement of the rare disease drug strategy, and continued to look at the […]

Blog Katie Allen May 2026

Last month, I had the opportunity to attend the Spring Canadian Organization for Rare Diseases (CORD) Conference online. This is always a great opportunity to catch up with other rare disease organizations from across Canada and to see how political and economic conditions are changing access to care for rare disease patients in all provinces. […]

Approval alpelisib by EMA

EMA has recommended granting a conditional marketing authorisation in the European Union (EU) for Vijoice to treat adults and children aged 2 years and older with severe or life-threatening PIK3CA-related overgrowth spectrum (PROS) disorders. Read more

Blog Arianna Faro May 2026

There was a time I would’ve never posted photos like this. I spent years hiding my birthmark—covering it, avoiding it, wishing it looked different. Years ago, I made a decision: I wasn’t going to live my life based on what other people might think. I stopped letting outside opinions define how I see myself. This […]

Prof. Dr. Suzanne Pasmans is running a half marathon again

One of our advisors, Suzanne Pasmans, has once again made a remarkable contribution to children with extremely rare skin conditions. On Saturday, April 26, 2026, she ran the half marathon in Padua to raise funds for a project supported by the Under Your Skin Foundation. What an incredible achievement and motivation! We are proud to […]

Blog Katie Allen April 2026

Finding community as a rare disease patient can sometimes be the most difficult part of the journey. I was so lucky to connect with CMTC-OVM when I was 19, and though I lost contact for a few years while I was at university, knowing there was an organization out there, with people like me, provided […]