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 […]
PxP Webinar 2 2024: Motivations for being a patient partner in research
The webinar series is all about patient engagement in health research, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). ‘Patient engagement’ in health […]
CureDuchenne FUTURES National Conference
The CureDuchenne FUTURES National Conference is an annual event focused on bringing education, connection, and hope to the entire Duchenne community.
Week in RARE: RARE Advocacy Summit and Health Equity Forum
Global Genes is on the move — Week in RARE is moving to Kansas City, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy […]