Myotonic Dystrophy Foundation Conference 2025
2025-05-01 08:00 - 2025-05-04 17:00 (America/New_York)
MDF invites you to attend the Professional Track at the 2025 MDF Conference in Indianapolis, Indiana from May 1st to May 4th! Sometimes called the “DM family reunion” – the MDF Conference is an event to unite the DM community in our journey towards treatments and a cure for myotonic dystrophy (DM). This year’s program includes educational sessions exploring research, drug development, symptom management, and other critical topics for DM families, plus opportunities for formal and informal networking, wellness, and fun!

Managing Anxiety in Children and Adolescents with Neurodevelopmental Disorders (NDDs)
2025-05-01 18:30 - 20:30 (America/Edmonton)
Presenters: Thomas Qiao, MSc, Research Coordinator, Department of Psychiatry, University of Calgary Noah Furlani, MSc, Research Coordinator, Department of Psychiatry, University of Calgary Dr. Kara Murias, MD PhD FRCPC, Pediatric Neurologist, Alberta Children’s Hospital; Assistant Professor, Department of Pediatrics and Clinical Neuroscience, University of Calgary

FSHD 360 Conference
2025-05-03 08:00 - 17:00 (America/Toronto)
FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in Ontario as well as from biopharmaceutical companies that are working on FSHD therapies. Get answers to your questions about your health, maintaining optimal function through physical therapy, exercise, assistive devices, and more. Don’t miss out on the opportunity to meet patients and families and network with FSHD Society leaders and activists in the community!

Applying Principles of Equity, Diversity, Inclusion, and Accessibility in Patient Engagement with Equity Seeking Groups
2025-05-05 15:00 - 17:00 (America/New_York)

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

PxP-Upcoming webinar: Growing your influence and a patient partner
2025-05-12 12:00 - 13:00 (America/Vancouver)
Join PxP for an engaging webinar hosted in collaboration with the Patient Engagement Research Ambassadors at the Institute of Musculoskeletal Health and Arthritis.

KidsAction Coaching: Community physical activity programs tailored for you!
2025-05-20 12:00 - 13:00 (America/Vancouver)
🎤 Dr. Stephanie Glegg—a pediatric occupational therapist, researcher, and proud parent of a child with neurodiversity—will share how KidsAction Coaching supports children with exceptionalities to thrive in community-based physical activity programs.
🌍 You’ll learn about:
✅ Free online resources for families & program leaders
✅ 140+ inclusive physical activities
✅ Goal-setting & adaptation strategies
✅ Cultural safety & child-centered programming

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.

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)

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.

Wilson Disease Event for patients, families, and caregivers
2025-06-07 08:00 - 17:00 (America/New_York)
The newly formed Canadian chapter of Wilson Disease Association is hosting a one day conference for WD patients, caregivers, friends, medical students, physicians and supporters.
They are bringing together the top Canadian doctors who treat Wilson disease.
Great opportunity to network and learn more about treatment options for Wilson disease.
More details and registration link coming soon.
Open to everyone interested in learning more about this rare genetic disorder.
For more information, visit alice.williams@wilsonsdisease.org.

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.

FSHD Connect Europe patient meeting 2025​​​​​​​​​​​​​​​​​
2025-06-13 08:00 - 2025-06-15 17:00 (Atlantic/Azores)
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe.

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 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.

2nd Global Cell & Gene Therapy Summit
2025-07-07 08:00 - 2025-07-09 17:00 (America/New_York)

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!

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.

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)

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!

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.

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.

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.
