Events

Name: Back-to-School with PH: Q&A Session
Start: 2025-09-04T11:00:00-06:00
End: 2025-09-04T12:00:00-06:00

Welcome to our Events Calendar! Stay up-to-date with the latest happenings in the rare disease community in Canada and beyond. From webinar and conferences to workshops and other events, our calendar is your one-stop destination for all rare disease-related happenings. Explore upcoming events, mark your calendar, and join as we work together to make a difference in the lives of those affected by rare diseases.

Watch our walkthrough videos in English and French for guidance navigating the calendar HERE.

August 2025
August 12 @ 8:00 am - August 15 @ 5:00 pm

7th International Indigenous Voices in Social Work Conference 2025 One Child Every Child: Indigenous Ways of Knowing, Doing, Connecting, and Being for Advancing the Well-Being of Our Future Generations

Situated between the Rocky Mountains and prairielands of Treaty 7 Territory in what we now call Southern Alberta, Canada, the 7th International Indigenous Voices in Social Work (IIVSW) Conference is a vital forum for sharing Indigenous perspectives and experiences in the field of social work. This global gathering brings together a diverse and inspiring community […]
August 13 @ 1:00 pm - 3:00 pm

ALS Canada: Driving & ALS Webinar

Join ALS Canada and Sunnybrook Health Sciences Centre to learn about the impact of ALS on driving ability, adaptive driving equipment, how an ALS diagnosis may affect insurance, and available alternative options.
August 13 @ 6:00 pm - 8:00 pm

PxP Africa 2025: Virtual Meeting August 13, 2025 From Research Participants to Patient Partners in Research: Centering African Patients Voices

PxP Africa is the first regional PxP meeting, led by Joab Wako and Kwanele Asante who are members of the 2025 steering committee for the global PxP conference taking place in September. PxP Africa will spotlight the critical role of patient partners—especially African patients—as active contributors in research, not just research participants. The session will […]
August 19 @ 8:00 am - 9:00 am

PxP Australia 2025

PxP Australia is a regional webinar, led by Letisha Living and Janelle Bowden who are members of the 2025 steering committee for the global PxP conference taking place in September. The theme of PxP Australia is "working well together" and Dr. Joan Carlini will be joining the session as a speaker.
August 19 @ 12:00 pm - 1:30 pm

Genome Editing in Stem Cells and Regenerative Medicine

CRISPR-based genome editing has revolutionized biomedical research, offering powerful tools to investigate gene function, model diseases, and develop novel therapies. This focused workshop will provide participants with both theoretical grounding and practical insights into current genome editing technologies. The Stem Cell Network (SCN) is pleased to offer the online workshop “Genome Editing in Stem Cells […]
August 21 @ 8:00 am - August 24 @ 5:00 pm

Building Bridges “Bridging” Conference
August 26 @ 8:00 am - 5:00 pm

2025 Transdisciplinary Child & Maternal Health Trainee Research Day

Led by the Alberta Children's Hospital Research Institute Trainee Association (ACHRITA) in partnership with the Owerko Centre and ACHRI, the graduate portion of this symposium is funded by UCalgary's Graduate Students' Association.
August 27 @ 12:00 am

Webinar: Patient Partnership 2025 – The Lupus100 Project

Co-developed by ERN ReCONNET and LUPUS EUROPE, The Lupus100 Project is a multilingual resource based on real patient questions about lupus, turning a national patient booklet into a Europe-wide, medically validated information tool. Speakers Eric Hachulla (clinician, ERN ReCONNET), Jeanette Andersen (patient representative, ERN ReCONNET), and Zoe Karakikla-Mitsakou (General Secretary, Lupus Europe) will share how meaningful collaboration […]
August 28 @ 6:00 am - 7:30 am

WHA Resolution Coalition Webinar: Turning the WHA Resolution on Rare Diseases into Action

This Coalition webinar will further discuss the formalization of the Coalition as well as the updates and next steps in the implementation of the WHA Resolution on Rare Diseases and the development of the Global Action Plan.
September 2025
September 3 @ 8:00 am - September 4 @ 5:00 pm

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 in partnership with Boston Children’s Hospital is designed to equip advocates with the knowledge, skills, and connections to navigate early-stage research with confidence. During this […]
September 4 @ 8:00 am - September 5 @ 5:00 pm

6th International Hypothalamic Hamartoma Symposium

Presented by Hope for HH and Hospital Sant Joan de Déu Barcelona, this symposium will gather leading experts, patients, and caregivers from around the world to share the latest research, clinical advances, and treatment strategies for Hypothalamic Hamartoma (HH)! Alexis Arzimanoglou and Helen Cross are part of the Symposium Committee.
September 4 @ 11:00 am - 12:00 pm

Back-to-School with PH: Q&A Session

Getting ready for a new school year can be exciting—but also challenging when pulmonary hypertension (PH) is part of the picture. Join in on Thursday, Sept 4 at 11:00 AM EST for a virtual round table with Janette Reyes, PH Pediatric Nurse at SickKids Hospital.