BHI Cafe Scientific-Where the brain and heart meet
2025-06-04 18:00 - 20:00 (America/Toronto)
This event will highlight innovative, patient-oriented strategies designed to address fragmented care for brain and heart conditions. Although brain and heart health are closely linked, the heath care system often treats them in isolation. This Café Scientific will showcase how research is driving real-world solutions that enhance patient care.

Superficial Siderosis Symposium 2025
2025-06-11 08:00 - 2025-06-13 17:00 (America/Halifax)
Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients, caregivers, clinicians, and researchers focused on advancing care, treatment, and research for superficial siderosis.

Community Conversation: The Living Rare Study
2025-06-12 16:00 - 17:00 (America/Edmonton)
Join NORD on Thursday, June 12 at 4 p.m. ET for a virtual conversation about the #LivingRareStudy. This session will guide you through joining the first large-scale study in the U.S. focused on tracking the real-life experiences of individuals and caregivers impacted by #RareDiseases, including how to create an #IAMRARE account, review the consent form, and navigate the platform.

ALS Canada: Webinar-Driving Progress Forward
2025-06-18 12:30 - 14:00 (America/Edmonton)
In anticipation of Global ALS Awareness Day on June 21, join ALS Canada’s CEO Tammy Moore and the ALS Canada Team for a free, insightful webinar. Discover the comprehensive services and programs ALS Canada offers to Canadians living with and affected by ALS.
This engaging session will cover all mission areas, including community services, advocacy, research, and knowledge exchange, showcasing the extensive resources available nationwide.

Defeat Duchenne Canada-Industry Partner Update: REGENXBIO
2025-06-23 16:00 - 17:00 (America/Edmonton)
Join Defeat Duchenne Canada for an educational webinar featuring Dr. Jahannaz Dastgir, Executive Director of Clinical Development at REGENXBIO, as she shares the latest updates on RGX-202, an investigational gene therapy for the treatment of Duchenne muscular dystrophy, and their Phase 1/2/3 AFFINITY DUCHENNE® trial.
This session will provide valuable insights into the science behind RGX-202, trial progress, and what this potential investigational treatment could mean for the Duchenne community. Whether you are a parent, caregiver, clinician, or advocate, this webinar is an opportunity to stay informed and ask questions directly to the team leading this important research.

THE FESTIVAL OF GENOMICS & BIODATA Boston
2025-06-24 08:00 - 2025-06-25 17:00 (America/New_York)
The Festival is designed principally for scientists and clinicians who are working in the fields of genomics, other omics, and/or using biodata , to further research, drug discovery, healthcare and – ultimately – deliver better patient outcomes.

Topics covered include genomics, single cell/spatial biology, multiomics, biodata, cancer research, drug discovery, AI, microbiome, proteomics, liquid biopsy and so much more.

United in Hope: 2025 Global Prader-Willi Syndrome Conference
2025-06-24 08:00 - 2025-06-28 17:00 (America/Denver)

The 2025 CRF International Conference
2025-06-25 08:00 - 2025-06-28 17:00 (America/Detroit)
The Choroideremia Research Foundation (CRF) cordially invites you to join them June 25 – 28, 2025, for their International Conference at the Radisson Blu Mall of America in Bloomington, MN. This event seeks to improve the quality of life for all those impacted by choroideremia (CHM) through educational programming, interactive engagement and networking.

NMD Rounds & Educational Webinars-Bulbar impact of SMA: approach to assessment and treatment
2025-07-08 17:00 - 18:00 (America/Toronto)
NMD4C and MDC are pleased to invite you to a CPD-accredited webinar Bulbar impact of SMA: approach to assessment and treatment. NMD4C and MDC are providing organizational and technical support. This webinar is supported by Novartis through a restricted educational sponsorship with no involvement or influence on program content.

Summer School on Genome Stability 2025 Montpellier
2025-07-15 08:00 - 2025-07-17 17:00 (Atlantic/Azores)
This Summer school is designed to provide students and postdocs with up-to-date knowledge in the field of Genome Stability.
This will be provided from July 15th to 17th through lectures by ten experts in the field, oral presentations by participants as well as round table discussions. Emphasis will be on promoting interactions and discussions between participants and experts. July 18th will be a symposium day, similar to an international conference, with short presentations from the invited speakers and poster presentations by the participants. On the morning of July 19th, there will be direct interactions between participants and research teams in Genome Stability from IGH (https://www.igh.cnrs.fr/en/) and IGMM (https://www.igmm.cnrs.fr/en/), two research institutes in Montpellier.

CANAIRI Co-Design Workshop
2025-07-19 10:00 - 14:00 (America/Toronto)
This workshop will co-design resources to support patients and families navigating the era of AI in medicine! The workshop is open to all and we welcome youth, adults, and families!

The 16th International CHARGE Syndrome Conference, “The Grand Adventure,”
2025-07-24 08:00 - 2025-07-27 17:00 (America/Denver)

Platelet Disorder Support Association (PDSA)-Immune Thrombocytopenia Conference 2025
2025-07-25 08:00 - 2025-07-27 17:00 (America/Edmonton)
This year, PDSA will host its 25th annual update on immune thrombocytopenia (ITP) for patients, caregivers and the medical community in Philadelphia, PA July 25-27. This year’s patient conference will take place at The Logan, Philadelphia, in the Center City District.

Community of Practice- Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research
2025-07-30 12:00 - 13:00 (America/Edmonton)
📢 On July 30th from 12:00 – 1:00 pm EST Emine Kocabas, Ashley Berger, & Vishma Sookdeo will be speaking about “Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research”.

ALS Canada: Driving & ALS Webinar
2025-08-13 13:00 - 15:00 (America/Edmonton)
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.

Building Bridges "Bridging" Conference
2025-08-21 08:00 - 2025-08-24 17:00 (America/Edmonton)

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.

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.

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.

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.

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.

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.
