For Patients
Webinars
Patient education and patient empowerment go hand in hand, and the former leads to the latter. The Patient Therapeutic Education Programme (PTEP) is set up with and for patients and aims to educate and help patients with inherited metabolic disease (IMD), family carers of individuals, and patient advocacy representatives to learn more about the diseases and everything they entail.
As part of the PTET, these webinars provide an opportunity to draw attention to the challenges faced by patients and their families in different countries and help learn lessons on how to improve the quality of life for patients. They serve as a platform for sharing best practices, spotlighting patient organisations’ initiatives and creating networking opportunities that could enhance collaborations and unify the efforts of the IMD community. The programme also aims to raise awareness about rare metabolic diseases and associated emergencies among healthcare professionals.
- Think Ammonia! Test and Diagnosis of Hyperammonaemia in time
- SanFilippo Webinar 1 – Urgencies & Pain Management
- SanFilippo Webinar 2 – Urgencies & Pain Management
Think Ammonia! Test and Diagnosis of Hyperammonaemia in time
Webinar organised in collaboration with Metabolic Support UK aiming to highlight the impact of hyperammonaemia for at-risk communities, and provide expert guidance on diagnosis, testing, and treatment. Main speakers: Prof. François Eyskens, Dr. Dries Dobbelaere, Dr. Gavin Mercer-Smith, Jonathan Gibson.
SanFilippo Webinar 1 – Urgencies & Pain Management
Webinar organised in collaboration with Sanfilippo Fighters aims to address topics of importance related to managing urgent situations in Sanfilippo and related conditions. Main Speakers: Dr. Serena Gasperini and Dr. Lucia De Zen.
SanFilippo Webinar 2 – Urgencies & Pain Management
Webinar organised in collaboration with Sanfilippo Fighters aims to address topics of importance related to managing urgent situations in Sanfilippo and related conditions. Main Speakers: Dr. José Pedro Vieira, Prof. Florian Lagler and Dr. Simon Moser.
