Save the date: Redefining Patient Engagement
2025-05-08 08:00 - 17:00 (America/Denver)

15th MGFA International Conference on Myasthenia and Related Disorders
2025-05-13 08:00 - 2025-05-15 17:00 (Europe/Paris)
Hosted by the MGFA, this influential gathering of neuromuscular researchers and medical professionals is a prominent opportunity to present your work and hear from accomplished peers from around the world. We hope that you will be able to join us for this premier scientific gathering of global MG leaders.

Rett Rounds: Live Webinar Education Session
2025-05-13 18:30 - 20:30 (America/Toronto)

Society for Clinical Trials’ 2025 Annual Meeting “Shaping the Future: The Right Questions, Robust Answers”
2025-05-18 08:00 - 2025-05-21 17:00 (America/Vancouver)

CureDuchenne 2025 FUTURES National Conference
2025-05-22 08:00 - 2025-05-25 17:00 (America/Kentucky/Louisville)
This annual event is dedicated to providing education, connection, and hope to the entire Duchenne community.

Indigenous Data Governance Principles & New Approaches to Race-Related Data
2025-05-22 13:00 - 14:00 (America/Edmonton)
Working closely with First Nations, Inuit and Métis partners as well as urban Indigenous health service providers, ICES has developed unique partnerships that include data governance and data sharing agreements. This work, supported by the Indigenous Partnerships, Data and Analytics department at ICES, enables Indigenous-driven analyses using ICES data. In this session, Dominique Legacy and Laura Ferreira-Legere will discuss becoming a trusted partner and forming partnerships with Indigenous communities and organizations. They’ll explore current processes for using Indigenous data, and share how this work has informed planning for community governance of immigration data at ICES

unfolding PANS PANDAS | reshaping BRAIN+BODY health
2025-05-29 08:00 - 2025-05-30 17:00 (America/Edmonton)
This inaugural national conference brings together leading experts from Canada and beyond to explore the physiological and psychological complexities of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS).

Unity Through Rheumatic Diseases: In-Person Event
2025-05-31 08:00 - 17:00 (America/New_York)
Take a Pain Check Foundation is thrilled to invite you to Unity Through Rheumatic Diseases, an in-person event dedicated to promoting collaboration and driving change in rheumatology. Join us on Saturday, May 31, 2025, from 8:00 AM to 5:00 PM EST at the InterContinental Toronto Centre (225 Front St W, Toronto, ON M5V 2X3) for a day of insightful discussions, networking, and empowerment.

Advancing Innovation in Rare Disease Research
2025-06-02 08:00 - 2025-06-03 17:00 (America/Vancouver)
Join researchers, clinicians, and industry leaders to discuss real-world research breakthroughs, novel #ClinicalTrial designs, and how NORD’s Rare Disease Centers of Excellence are leading collaborative efforts in #RareDisease innovation.

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.
