The latest news from PTC

Londen shares her story as the mother & caregiver of Autumn, who has juvenile Huntington’s disease.

In honor of International Ataxia Awareness Day (IAAD), recognized on September 25th each year, we are joining forces with the global ataxia community in their efforts to bring awareness to this rare disease. The theme of this year’s day is “Ask Me About Ataxia” – encouraging people to learn more about ataxia by asking questions.…

Coaching and mentoring have become an increasingly important tool for personal and professional growth, positive change and performance. At PTC, we have implemented these development practices, which have proven to be beneficial for both employees and the organization by enhancing career and leadership development and employee satisfaction.  In 2023, PTC launched a formal Coaching and…

Kailey is grateful for the Friedreich's ataxia community and strives to raise awareness of FA.

Brittany encourages others with Friedreich's ataxia to take their time accepting their diagnosis.

Tomáš wants to remain as independent and active as possible with FA for as long as possible.

PTC Germany: A Decade of Advocacy and Innovation PTC Germany has been a relentless champion for people with rare diseases. Since the office opened in September 2014, the team has made incredible strides in transforming lives through enhanced awareness, patient advocacy and groundbreaking treatments. Most importantly, PTC Germany has given patients a new voice. Through…

PTC strives to support women and underrepresented groups by amplifying their voices, advocating for their growth, raising awareness of important topics and providing resources. Advocating for Women in the Rare Disease Community To honor World Duchenne Awareness Day in 2023, we spotlighted inspiring women in the Duchenne community, whether they were a patient, caregiver or…

PTC research highlights opportunities to improve the transition experience for young adults living with Duchenne In 2023, PTC supported a research project conducted by a patient-focused consultancy Redline Strategic exploring the experience for teenagers, young adults and caregivers living with Duchenne muscular dystrophy (Duchenne) as they transition from pediatric care to adult care. The research…

World Duchenne Awareness Day is on Sept. 7. In honor of this year’s theme, “raise your voice for Duchenne”, we are highlighting remarkable individuals in the Duchenne community who are doing just that: using their voices to raise awareness of Duchenne, advocating for those living with the condition and inspiring the community to join them…