Tell Me More: Why is Obtaining a Diagnosis Challenging?
We invite you to our next UDNF Tell Me More Lecture Series on Thursday, July 11th at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted […]
Sneak Peek into Rare Disease Day 2025
Join our upcoming webinar for a sneak peek into Rare Disease Day 2025! On Wednesday 17 July we will be hosting three webinars throughout the day to cater to different […]
Alberta SPOR Support Unit – Patient Engagement Team Journal Club
Join us for June’s Journal Club discussing “Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood”. Register […]
PRISMS Leads the Way To Support Those Living with Smith-Magenis Syndrome at 12th International Conference
PRISMS 12th International Conference is the largest conference specifically focused on Smith- Magenis Syndrome (SMS) in the world. The conference goal is to educate and share information about SMS while […]
LGBTQ+ Health Care Praxis: Building More Equitable and Just Futures Today
This conference is part of the Montréal Health Ethics Lecture Series 2024. It will be presented in English. How might we build more equitable and just futures for LGBTQ+ people and communities, […]
Is this okay? Community attitudes on using health data in research in Canada and Australia: A cross-cultural exchange
The access and use of health data for research raises concerns related to privacy, commercial motives, equity and fairness for members of the public who want to know who is […]
June National Pain Round: The Science of Pain – Learning from Human Cells
Human cell research is pivotal in the pain space as it offers unparalleled insights into the underlying molecular mechanisms by bridging the gap between traditional preclinical animal models of pain […]
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 […]
Rare Disease Day
Rare Disease Day is the globally coordinated movement on rare diseases, initiated in 2008 and led by EURORDIS and its 70+ national alliance patient organization partners working towards equity in […]