The World Orphan Drug Congress is the largest and most established orphan drugs and rare diseases meeting of its kind across the globe. Its 14th annual edition took place in Barcelona, Spain, from October 30 to November 3, 2023. There were 1,500+attendees, 300 speakers and 80+exhibitors.
On November 2 the President of AIPI Italian Pulmonary Hypertension Association and Secretary General of the Alliance for Pulmonary Hypertension, Pisana Ferrari, took part in an insightful panel discussion moderated by Durhane Wong-Rieger, Chief Executive Officer & Chair of the Canadian Organisation for Rare Diseases (CORD) and Rare Diseases International alongside Flaminia Macchia, Patient Partnership Leader at Roche, and Annette Bakker, President of the Childrens Tumor Foundation, addressing the unique challenges faced by individuals aging with rare diseases.
The panel provided a valuable platform for her to delve into the multifaceted issues encountered by pulmonary hypertension patients as they navigate the complexities of aging. From age-related physiological shifts to potential co-morbidities, and the intricacies of treatment administration, to adapting to an increasingly virtual world, mental health considerations, and support system dynamics — these are crucial aspects that demand attention.
It’s evident that more comprehensive data is essential to further understand and address these challenges. It’s important to acknowledge that these concerns are not exclusive to pulmonary hypertension; they resonate across a spectrum of rare diseases. As Flaminia rightly highlighted, there’s no established roadmap for aging with a rare disease — it truly is uncharted territory. This discussion serves as a vital step towards shedding light on these intricate journeys and advocating for better support and solutions.
Read more the congress at this link