February 27th marked a memorable and impactful day at the Westminster Parliament Reception for Rare Disease Day, which was graciously hosted by Genetic Alliance. It was an honour to be part of such a significant event, where individuals from across the rare disease space came together to share stories, raise awareness, and work towards positive […]
Category Archives: Uncategorized
27
Jan
Jan
Positively Rare is a groundbreaking collection that goes beyond the medical aspects of rare diseases. It’s a celebration of the human spirit, a testament to the strength, purpose, and love that can flourish even in life’s most challenging moments. As Rob Haselberg, a Huntington’s disease gene carrier and rare disease advocate, aptly puts it, “This […]
16
Jan
Jan
We are excited to announce our 6th PTEN Patient Day! This annual event brings together PTEN patients and families for a day of learning, connection, and support. Details are below. Save the Date Date: Sunday, 29th June 2025 Time: 10:00 AM – 4:00 PM Venue: Sense TouchBase Pears, Selly Oak, Birmingham Join us for an […]
22
Sep
Sep
We are excited to introduce you to the Pipgen Art Project, an extraordinary collaboration between science and art! Over the past five months, a cohort of ITN PhD students have worked alongside talented art students from the prestigious Cambridge School of Visual & Performing Arts, creating a unique collection of 15 science-inspired artworks. Each piece […]
06
Jan
Jan
Changing the Narrative in Person-Centred Health and Social Care I wear many, many hats in my day to day life. I work full time as well as writing, advocating, raising awareness for rare genetic conditions, with a side of inclusion activism thrown in for good measure. I’m also a bit of a social media addict. […]