Webinar: How do rare conditions impact family and social relationships
This webinar will explore how rare conditions shape and inform social and family relationships, drawing from the lived experience of affected individuals, caregivers and parents, and siblings. The outcome of […]
#ChildHealthCan2024
Children’s Healthcare Canada and co-hosts, the Janeway Children’s Hospital Foundation and NL Health Services, invite you to join us in picturesque Newfoundland and Labrador from October 20-22, at the St. […]
4th Regional Meeting on ITP – PDSA Canada
On September 29, 2024, the 4th annual Canadian Regional Meeting will take place in Burlington, ON, for patients and families affected by ITP. The event will be held at the […]
Cavernous Malformation Canada – 2024 Patient Conference
This year our patient conference is ONE DAY ONLY, with optional activities happening Saturday. Keynote by Dr. Brent Derry, many expert presentations, and lunch with the scientists, as well as […]
Webinar: Rare Barometer survey on the impact of rare diseases on everyday life
On Wednesday 10 July, Rare Barometer, the global survey initiative of EURORDIS – Rare Diseases Europe, will launch a new survey on the impact of rare diseases on everyday life. The […]
CHILD-BRIGHT Network – Applying Anti-Racism Principles in Healthcare
Join us for “Applying Anti-Racism Principles in Health Care,” on July 31, 12:00-2:00 p.m. EST/10:00 a.m.-12:00 p.m. PST. In this interactive workshop, Anna Hossain will be exploring systemic racism in the health care and research […]
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 […]
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 […]
MitoMed Conference 2024
Each year, the United Mitochondrial Disease Foundation (UMDF)’s Mitochondrial Medicine Conference brings together the best minds in mitochondrial medicine and gives patients and families the opportunity to meet some of […]