2025 RARE Drug Development Symposium
Rare disease patient advocates are taking the lead in research like never before, driven by the urgent need for new treatments. The RARE Drug Development Symposium hosted by Global Genes […]
Lunch N’ Learn: Talking Research with Patient Partners
Join this virtual workshop on Zoom on April 24, 2025, at 12:00 p.m. (EST) to develop communication skills for engaging with patient partners in research. Hosted by the HBHL EDI Trainee Committee, […]
Vancouver Patient Education Meeting – IN-PERSON
Montreal Patient Education Meeting – IN-PERSON
PxP Webinar 3 2024: Different opportunities to engage as a patient partner
The webinar series is all about patient engagement in health research, also known as patient and public involvement (UK) or consumer involvement (Australia). It is worth mentioning that ‘patient engagement’ […]
2024 Global CMT Research Convention
The CMT Research Foundation unites the voices of patients, researchers, pharma companies, and regulatory agencies to develop treatments for CMT. This event takes place over three days. Thursday and Friday […]
PxP 2024 Conference (For Patients, By Patients)
Standing for ‘For Patients, By Patients’, PxP 2024 is entirely led by an international team of patient and public partners and is a Patients Included™ event. Our purpose is to […]
RITA Patient-Centered: Social rights of a person with a rare disease and the patient perspective in advocacy, the case of Malta
The new ERN RITA Patient-Centered Webinar Series is made by the Education Working Group with patients advocates active in the ERN RITA and focuses on the unique needs and challenges […]
IRSF Rett Syndrome Scientific Meeting
Part of ASCEND 2024, the IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2-day meeting, attendees […]
Caregiver Connextion
Join Jett Foundation’s monthly virtual support group for parents, family members or caregivers of females who have been diagnosed with Duchenne muscular dystrophy or are symptomatic carriers.