Living with Rare Neuroimmune Conditions: Patient Views & Perspectives
Please join Sumaira Ahmed, NMOSD patient and founder of The Sumaira Foundation, for a panel discussion featuring five patients living with rare neuroimmune conditions. Patient perspectives and lived experiences are […]
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 […]
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 […]
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 […]
RARE Storytelling Webinar
While each rare disease presents unique challenges, the common thread of stories and experiences unites us as a community. Global Genes rare storytelling initiative aims to empower individuals within the […]
Platelet Disorder Support Association-ITP Conference 2024
This year, PDSA will host its 24th annual update on immune thrombocytopenia (ITP) for patients, caregivers and the medical community in San Antonio, Texas July 26-28. This year’s patient conference […]
IMAGINE Patient Training Experiences Through the PaCER Program
Join IMAGINE SPOR tomorrow for Dr. Deborah Marshall’s (Steering Committee Member) session on : “IMAGINE Patient Training Experiences Through the PaCER Program” at the 2024 Northwest SPOR Collaborative Forum!
21st BI-ANNUAL NATIONAL SCLERODERMA CONFERENCE
Held in beautiful St. John’s, NL, the 21st Bi-Annual National Scleroderma Conference offers an information-rich opportunity for people living with scleroderma, their caregivers, family members, friends, and medical professionals. Research […]