The latest news from PTC

Congratulations to France, the 2023 FIPFA Powerchair Football World Cup champions, who defeated England in a thrilling Final complete with a shootout tiebreaker! Placing in 3rd after England was the USA. Last week brought great excitement and opportunity to showcase the true meaning of inclusion at Quaycentre Sydney Olympic Park in Australia.  In one media…

At 39 years old, there’s not much that Juan Morales hasn’t already achieved. Despite living with spinal muscular atrophy (SMA), a severe, genetic motoneuron disease causing muscle weakness and wasting, Juan’s own determination has led him to transform his life to find purpose. From writing an autobiographical book on personal development, advocating for people with muscular…

By Rafael Sierra, Executive Director, Global Medical Affairs – Global Gene Therapy Lead Rare and ultra rare diseases present unique challenges for research and healthcare, especially when patients are geographically dispersed, and the condition presents with high heterogeneity. Disease registries have emerged as a valuable tool to continue understanding the disease progression and the natural…

Juan Bautista D’Angelo is a powerchair football player on the Argentinian National Team and Sebastián Tisera is the team’s coach. The team is among 10 nations competing at the FIPFA Powerchair Football World Cup in Australia, October 15-21. Regarded as a rising power in the world of powerchair football, Argentina is ready to challenge the…

Scott Hilland and Sean McKinney are two very passionate and confident powerchair football athletes playing for the Northern Ireland team at the FIPFA Powerchair Football World Cup 2023. Together the two young men have 19 years of experience on the playing field which will set them and their team up for success. In this interview…

This October, the Republic of Ireland team will be competing at the FIPFA Powerchair Football World Cup 2023 in Australia. Equipped with good ball shooting skills, leadership, strong team spirit and competitiveness, Ireland’s diverse team is well positioned to “close the gap in the top 3”.  PTC had the great pleasure to witness this firsthand…

Latin America (also referred to as LATAM) is a vast region with almost 600 million people – and therefore, many people there are impacted by rare diseases. “Having a presence in LATAM is incredibly important for PTC, as it allows us to increase access to our treatments for people living with rare diseases in this…

Jonathan Bolding is England’s Powerchair Football Team captain heading to Australia for the FIPFA Powerchair Football World Cup 2023. The team is currently 3rd ranked in the world and one of 10 nations competing for the 2023 trophy.  Jonathan, a highly experienced player with an impressive 21-year track record has already participated in three world…

Mark Rance, Senior Director, Clinical Development, PTC Therapeutics, has helped people living with the rare cancer leiomyosarcoma (LMS) in his work as a surgeon, and has seen firsthand the high unmet need for a treatment to improve the quality of life for this community. LMS is a rare and aggressive cancer found in smooth muscle.…

Judit Illes, Director, Government Affairs & Public Policy at PTC recently contributed to a newly published white paper, “Pioneering the New Era of Newborn Screening.” We connected with Judit to learn more about newborn screening, why it is so important and what she hopes people take away from this comprehensive paper on proposed reforms to…