Webinar: Patient Partnership 2025 – The Lupus100 Project
2025-08-27 00:00 (America/Edmonton)
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 between patients and clinicians shaped this impactful communication initiative!

WHA Resolution Coalition Webinar: Turning the WHA Resolution on Rare Diseases into Action
2025-08-28 06:00 - 07:30 (America/Edmonton)
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.

2025 RARE Drug Development Symposium
2025-09-03 08:00 - 2025-09-04 17:00 (America/Denver)
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 1.5 day event, attendees will have a mix of main stage sessions, targeted breakouts, group presentations, and hands-on workshopping. Whether you’re initiating research efforts or looking to refine your strategy, this symposium offers practical insights to accelerate progress in research strategies and activities.

6th International Hypothalamic Hamartoma Symposium
2025-09-04 08:00 - 2025-09-05 17:00 (America/Belize)
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.

Back-to-School with PH: Q&A Session
2025-09-04 11:00 - 12:00 (America/Edmonton)
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.

Rare Trials Summit
2025-09-09 08:00 - 2025-09-10 17:00 (America/Edmonton)
Bringing together key stakeholders in the clinical research community to accelerate the development of new rare disease therapies from average 10-12 years to under 3 years.

2025 C-Path Global Impact Conference
2025-09-09 08:00 - 2025-09-11 17:00 (America/Vancouver)
As C-Path celebrates its 20th anniversary, CGIC 2025 stands out as a milestone event—bringing together a global community dedicated to advancing medical innovation and improving patient outcomes.
Whether you’re joining us from industry, regulatory agencies, academia, patient organizations, or as someone with lived experience, you’ll find valuable insights, thought-provoking discussions, and meaningful opportunities to collaborate.

PxP2025
2025-09-09 08:00 - 2025-09-12 17:00 (America/Edmonton)
The PxP (For Patients, By Patients) conference will be September 9-11 (for those in Europe, Africa or North and South America), or 10-12 (Asia and Oceania). This free, virtual event aims to bring you a wealth of knowledge, skills and resources on Patient Engagement in health research.

PCSI 2025
2025-09-10 08:00 - 2025-09-12 17:00 (America/Toronto)
From September 10 to 12, 2025, the 37th PSCI conference will be held at the Quebec City Convention Centre under the theme: “Patient Grouping as a Driver of Value in Health: The Patient at the Heart of Our Decisions.” The topics will be:

Innovations in case-mix, data and technology.
Advancements in coding, classification systems, and data quality.
Case-mix and costing beyond funding.
From case-mix to policy: the patient at the center.
Connecting funding with patient outcomes and quality of care
Using costing and funding to create value and demonstrate productivity.
Artificial intelligence & case-mix: in service of patient-centered care.

On September 9th, there will be a day of pre-conference workshops.

IMPaCT Webinar: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network
2025-09-10 10:00 - 11:00 (America/Edmonton)
Speakers: Tannis Erickson & Naveen Poonai Title: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network

2025 NMD4C Annual Meeting
2025-09-11 08:00 - 17:00 (America/Toronto)
Registration is now open for the 2025 NMD4C Annual Meeting!
Join NMD4C in Ottawa on Thursday, September 11, for a full day of dynamic discussions, research updates, and networking opportunities—just ahead of the 7th Ottawa International Conference on Neuromuscular Disease & Biology.

PHA-Medical Think Tank
2025-09-11 08:00 - 2025-09-12 17:00 (America/Toronto)
Join Canada’s premier CPD event on pulmonary hypertension, co-developed by PHA Canada and the Canadian Thoracic Society, including:
· Keynote presentations by Dr. Steven Kawut (University of Pennsylvania) and Athénaïs Boucly (University of Paris-Saclay)
· Presentations on pulmonary hypertension topics from diagnosis through treatment
· Updates on pulmonary hypertension research.
September 11 & 12 in Toronto or via Zoom. For more information and to register: https://www.phacanada.ca/thinktank

2025 Pulmonary Hypertension Community Conference
2025-09-11 08:00 - 2025-09-13 17:00 (America/Toronto)
​Join PHA Canada’s 2025 PH Community Conference to explore how they can drive meaningful change and inspire hope across the PH community. This year’s event will feature powerful keynote speakers, interactive workshops, and engaging panel discussions—all designed to empower you with new strategies, the latest research, and stories of resilience and innovation.

Ottawa NMD 2025 Conference
2025-09-11 08:00 - 2025-09-13 17:00 (America/Toronto)
7th Ottawa International Conference on Neuromuscular Disease and Biology will take place at the Fairmont Château Laurier in Ottawa, Canada on September 11-13, 2025.
The Ottawa NMD 2025 conference will offer an outstanding program emphasizing recent breakthroughs in basic and translational research and clinical discoveries in neuromuscular disease.

2nd Edition of the Symposium on Genetic Medicine
2025-09-12 08:00 - 17:00 (America/Toronto)
This year, the symposium will be dedicated to rare diseases, a major topic in genetics.

OTCD-Gala for a Cure
2025-09-12 11:00 - 23:30 (America/Toronto)

Manchester Dysmorphology and Developmental Disorders Conference
2025-09-16 08:00 - 2025-09-19 17:00 (Europe/London)
The Manchester Dysmorphology Conference (MDC) is a biennial event that has brought together global experts in genomic syndromology since 1984. Established by Professor Dian Donnai, MDC promotes the exchange of knowledge and ideas to advance the understanding of developmental disorders and congenital malformations. Each conference offers leading-edge content and a supportive setting, encouraging discussions, building collaborations, and inspiring innovative strategies to improve the lives of individuals living with rare conditions.

Canadian Cystic Fibrosis Conference
2025-09-17 08:00 - 2025-09-19 17:00 (America/Edmonton)
Join CFC September 17 –19, 2025 for Cystic Fibrosis Canada’s first Canadian Cystic Fibrosis Conference, hosted in Calgary, Alberta.
The conference will spotlight the development of Canadian consensus and national standards for CF care, explore early implementation strategies, and highlight hot topics in healthcare and research and knowledge gaps that future research and clinical trials can address.

RareKids-CAN-Education Session: Family Engagement in Research Fundamentals
2025-09-17 14:00 - 15:00 (America/Toronto)
Join RareKids-CAN on September 17, 2025, from 2-3pm ET for their next education session, led by their Patient and Family Engagement Facilitators. This session is open to everyone interested in strengthening engagement practices. Don’t miss out!

EURORDIS Webinar: Patient Partnership 2025 – The Lupus100 Project
2025-09-18 18:00 - 19:00 (America/Edmonton)
The Lupus100 Project, recognized as a winner of the 2025 Patient Partnership Good Practice Challenge, highlights the crucial role of patient partnership in improving communication about rare diseases such as lupus.

2e Journée québécoise sur les sarcomes
2025-09-19 08:00 - 17:00 (America/Toronto)
La 2e édition de la Journée québécoise sur les sarcomes rassemble la communauté médicale et scientifique québécoise œuvrant dans le domaine des sarcomes. Il offre une occasion unique pour :

Assister à des conférences et présentations de pointe
Favoriser des collaborations interinstitutionnelles porteuses
Renforcer les liens entre chercheuses, chercheurs, cliniciennes et cliniciens pour maximiser notre impact collectif.

LHON Awareness Day 2025 Webinar: "Exploring the Power of Nutrition in Mitochondrial Diseases"
2025-09-19 15:00 - 17:00 (America/Edmonton)
This year’s theme focuses on how nutrition can support mitochondrial health. You’ll hear from experts across Australia, Italy, and Brazil, sharing practical strategies and the latest research relevant to LHON and other types of mito.

Undiagnosed Hackathon 2025
2025-09-21 08:00 - 2025-09-24 17:00 (America/Chicago)
350 million people live with an undiagnosed disease worldwide. Genome sequencing can provide answers for 40% of the People Living With Undiagnosed Disease (PLWUD) but around 60% still don’t receive a diagnosis. The purpose of the Undiagnosed Hackathon is trying to find new ways and collaborations to solve the undiagnosed diseases, that can’t be solved today. In this unique event multidisciplinary teams of clinicians, bioinformaticians/molecular biologists, scientists, developers, AI specialists and brilliant minds will work together to tackle the most difficult diseases.

Advancing Rare Disease Healthcare: Spotlighting the Economic and Health System Burden of Disease
2025-09-23 09:30 - 11:30 (America/Edmonton)
Please join this 1.5-hour live virtual meeting to hear esteemed faculty describe the global economic impact of rare diseases on patients and healthcare systems. Expert community advocates will also share their practical experience of advancing patients’ needs with key stakeholders. Panel discussion and audience questions will consider how to have meaningful impact in your country or region with patient healthcare experience data and insights to drive change in practice and better health outcomes for people living with rare disease. The live virtual meeting is further supplemented with published studies and content.

Connected in Care Conference
2025-09-24 08:00 - 2025-09-26 17:00 (America/Toronto)
As part of Pregnancy and Infant Loss Network’s long-term vision, Connected in Care are hosting their second biennial educational conference at the Sheraton Parkway Toronto North Hotel & Suites in Richmond Hill on Wednesday, September 24 – Friday, September 26, 2025.

La dysferlinopathie: Une dystrophie musculaire affectant le muscle strié
2025-09-24 10:00 - 12:00 (America/Edmonton)
1st episode of the RQMO – RARE webinar series. QC presented by Camille Bouchard, PhD student in molecular medicine in the laboratory of Professor Jacques P. Tremblay, Université Laval
Moderator: Jonathan Pratt, Executive Director of the RQMO

6th Western Canadian Neuromuscular Conference
2025-09-25 08:00 - 2025-09-27 17:00 (America/Edmonton)
The 6th Western Canadian Neuromuscular
Conference is confirmed for 2026! Don’t miss
the opportunity to network with leading experts
and stay at the forefront of medical
advancements in the field of neuromuscular
diseases.

Biennial National Conference
2025-09-26 08:00 - 2025-09-28 17:00 (America/Edmonton)
Registration information coming soon.

National Day for Truth and Reconciliation
2025-09-29 15:30 - 17:30 (America/Edmonton)
Orange Shirt Day is an opportunity to honour survivors and raise awareness of the lasting impacts of residential schools. It’s also a time to celebrate the resilience of Indigenous Peoples and to nourish our shared commitment to reconciliation.
The Indigenous Health Program will host a film screening and hold space with guest speakers and performers on Sept. 29 at 3:30 – 5:30p.m. in the Libin Theatre, Foothills campus

Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights, and cGMP Gene Therapy Manufacturing capabilities in Canada
2025-10-01 13:00 - 16:00 (America/Toronto)
The Stem Cell Network (SCN) and the National Research Council Canada (NRC) are excited to contribute to the national conversation on cell and gene therapy for rare diseases. Building on the 2024 event titled “Canadian Rare Disease Ecosystem Symposium: Genetic Therapies for Rare Disease”, SCN and NRC are pleased to invite you to the Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights, and cGMP Gene Therapy Manufacturing Capabilities in Canada–a focused half-day event dedicated to advancing gene and cell therapy development in Canada through regulatory alignment and manufacturing readiness.
This virtual symposium will convene international regulatory authorities, Canadian manufacturing experts, and rare disease developers to explore two critical enablers of translational success: clinical trial readiness and cGMP manufacturing capacity.
