The Association X Fragile Québec Conference
2024-11-02 08:00 - 18:00 UTC

2024 Annual Pain Centre Conference - Building Bridges to Reduce Disparities in Pediatric Pain
2024-11-05 | toronto, ontario, 686 Bay Street, Toronto, Ontario, M5G 0A4, Canada

2024 International Congress for Ataxia Research
2024-11-12 08:00 - 2024-11-15 17:00 UTC
Today marks the opening of the largest-ever scientific conference on ataxia research — the International Congress for Ataxia Research (ICAR) is welcoming a record-setting 600 attendees. The London-based conference runs through to November 15 and will be a comprehensive scientific review of new research into the ataxias, covering topics from advances in genetics and disease mechanisms to therapeutics approaches, as well as a debate on emerging ataxia research topics. ICAR represents a strong collaboration between global advocacy organizations focused on advancing research for ataxia, including co-hosts Ataxia UK, Friedreich’s Ataxia Research Alliance (FARA), National Ataxia Foundation (NAF), and Ataxia Global Initiative (AGI).

4th Annual Symposium for Researchers and Clinicians on Wiskott Aldrich Syndrome
2024-11-18 | San Raffaele Institute, Milan, Italy
The fourth international symposium for researchers and clinicians on Wiskott Aldrich Syndrome is being held in Milan, Italy and offers access to the latest research and analysis related to this rare disease.
Meeting participants will gain valuable insights into innovative perspectives in both basic and clinical research. The scientific programme will draw together experts from around the world to discuss breakthroughs in basic research, advances in clinical practice, novel therapeutic approaches and new insights into stem-cell and cellular therapies. An ideal forum to share knowledge, connect with professional colleagues and grow your professional network.

Genetic Rare Immune Disorders Symposium (GRIDS)
2024-11-24 08:00 - 2024-11-25 17:00 (America/Halifax)
GRIDS brings together world renowned experts from across the globe to discuss recent developments and unique challenges in the field of lysosomal storage disorders and/or rare genetic diseases.

2025 International Scientific Conference on Albinism
2025-01-21 08:00 - 2025-01-24 17:00 (Europe/Paris)
The Global Albinism Alliance (GAA) is very pleased to announce the 2025 International Scientific Conference on Albinism – ISCA 2025, that will be held virtually on January 21-24, 2025.
ISCA is THE meeting point worldwide for all scientists interested in sharing and improving knowledge of the biomedical aspects of albinism and, more generally, improving the health of those with albinism. It builds on the momentum created in 2012 with the launch of the EDA (European Days of Albinism) conference series that evolved into ISCA in 2022.

The Festival of Genomics & Biodata London
2025-01-29 08:00 - 2025-01-30 17:00 UTC
The UK’s largest life sciences event is back!
Now celebrating its 10th year, the Festival has long been the annual get-together for the UK genomics community. And with more speakers and sessions than ever before, the 2025 edition is bigger and better than ever!
As the genomics sector has expanded, so has its impact. The Festival now covers a diverse array of topics beyond genomics, including biodata, diagnostics, cancer research, healthcare, drug discovery and development, infectious diseases, AI, proteomics, multi-omics, single-cell & spatial analysis and so much more.

The 8th International TREAT-NMD Conference
2025-02-06 08:00 - 2025-02-08 17:00 UTC
The next TREAT-NMD international conference will take place in Dubai, United Arab Emirates from the 6th to 8th of February 2025. It will be a fantastic event welcoming delegates from all over the world including academics, patients and carers, patient advocacy organisations, clinical specialists and industry. Delegates will have the opportunity to:

Network with partners on key issues and challenges in neuromuscular disease
Engage with panels of international experts who will inform, stimulate and challenge debate
Acquire the latest updates on standards of care, outcome measures, patient reviews, and new developments

It is a fantastic opportunity for all stakeholders, including patients, academics, clinicians, registry curators and industry representatives, to get together to network, learn and exchange ideas about translational research.
Registration is not yet open however to be the first to find out updates on the programme, themes, speakers for the conference and to be notified when registration opens, register your interest here.

Update on NMOSD and MOGAD' Meeting, 7-8 Feb 2025
2025-02-07 08:00 - 2025-02-08 17:00 (America/Sao_Paulo)
The Update on NMOSD and MOGAD meeting, organized by the European Charcot Foundation in partnership with the European Network of NMOSD and MOGAD, will take place in São Paulo, Brazil, on February 7-8, 2025.

PKU CON 2025
2025-02-14 08:00 - 2025-02-15 17:00 (Europe/Helsinki) | milan, italy, Milan, Italy
PKU CON aims to bring together all stakeholders from around the globe currently involved in the management of patients affected by this inborn error of metabolism with an unique and same, single goal: optimize the care and assistance for patients affected by Phenylketonuria.
Many topics will be discussed during this first edition, starting from a renewed vision of the pathology, with possible identification of new biomarkers and metabolic control indices, to updates in the field of dietary and pharmacological interventions, and addressing relevant assistance-related issues such as burden of illness and unmet needs.

17th International Conference on Neurology and Neuromuscular Disorders
2025-02-17 08:00 - 2025-02-18 17:00 (Europe/Paris)

Rare Disease Day 2025 University of Alberta
2025-02-28 08:00 - 16:00 (America/Denver)

MDA Clinical and Scientific Conference
2025-03-16 08:00 - 2025-03-19 17:00 (America/Chicago)

Rare Disease Day 2025 by McGill’s RareDIG
2025-03-18 18:30 - 21:30 (America/Halifax)
McGill’s RareDIG is excited to welcome you to their seventh edition of Rare Disease Day! Students, researchers, physicians, patients, and community members, including the RQMO, will meet at Jeanne Timmins Amphitheatre at The Neuro (Montreal Neurological Institute-Hospital) in Montreal on March 18th at 6:30 pm to discuss the challenges faced by people with rare diseases, research and advocacy efforts. Poster presentations will also be prepared by student researchers with a keen interest in making a difference in the rare disease field.
Presentations are open to all and free of charge. Presentations will be in English only, and the event will be held in person only, with no online broadcast.

13th ISNS European Regional Meeting Luxembourg
2025-03-23 08:00 - 2025-03-26 17:00 (Europe/Paris)
Newborn Screening LIVE from the Heart of Europe

Vancouver Patient Education Meeting – IN-PERSON
2025-03-29 08:00 - 13:30 (America/Los_Angeles)

Conscience Symposium on Open Drug Discovery
2025-04-07 08:00 - 2025-04-08 17:00 (America/New_York)

13th ISSAID Meeting
2025-04-08 08:00 - 2025-04-10 17:00 (Europe/Helsinki) | paris, Paris, France
13th Meeting of the International Society of Systemic Autoinflammatory Diseases (ISSAID), which will take place in Paris from April 8th to 10th, 2025, at the “Cité Internationale” – a magnificent haven of peace near many transport amenities where you will particularly enjoy the sumptuous Honorat lounge overlooking a lush green park.
April in Paris offers a delightful mix of mild weather, budding greenery, and a relaxed atmosphere, perfect for strolling along the Seine after a day of work.
The ISSAID 2025 meeting will provide an opportunity for pediatric and adult rheumatologists, immunologists, general pediatricians and internists, scientists, and others interested in systemic autoinflammatory diseases to come together to share new findings related to autoinflammation and to learn about recent advances in this field.
The ISSAID 2025 meeting will highlight the topic of neurologic inflammation, and we hope it will facilitate better assessment, care, and research on this particularly complex subject. We will present current topics such as artificial intelligence, mechanisms of inflammation, and new diseases.
The ISSAID 2025 meeting will promote interactions between old and new generations so that the science of SAIDs can be transmitted and best adapted to societal transformations and the challenges of tomorrow’s medicine.

Neuropsychiatry & Mental Health 2025
2025-04-24 08:00 - 2025-04-25 17:00 UTC
Theme: Innovations in Neuropsychiatry and Evolution in Medicines of Neurological Disorders for Better Mental Health.

Limb-Girdle Muscular Dystrophy Masterclass
2025-04-24 08:00 - 2025-04-25 17:00 (America/New_York)
Are you involved in diagnosing or managing Limb-Girdle muscular dystrophy (LGMD)? This April 2025, join TREAT-NMD™ in Montreal, Canada, for an in-person educational event designed for healthcare professionals in the neuromuscular field.

Summit 2025: Ending The Diagnostic Odyssey
2025-04-28 08:00 - 2025-04-30 17:00 UTC | washington, WA, United States
A first-of-its kind collaborative event for Undiagnosed, Ultra-Rare & Rare disease industry, clinical and community leaders.
The diagnostic odyssey for rare diseases is a significant challenge, often leaving patients and families lost in a maze of tests, misdiagnoses, missed opportunities to participate in clinical trials, and delayed treatment. Summit 2025 brings together a diverse group of stakeholders – patient advocates, industry leaders, policymakers, clinicians, researchers and payers – to chart a collaborative path towards a future where timely and accurate diagnoses are a reality for all with rare diseases.

FSHS 360 Conference
2025-05-03 08:00 - 17:00 (America/Toronto)
Patients and family members affected by FSHD are invited to attend an event hosted by the FSHD Canada Foundation and the FSHD Society! The FSHD 360 Conference Ontario is an event where patients and family can meet leaders in FSHD research and hear the latest updates, including presentations from NMD4C investigators Dr Lawrence Korngut and Dr Hanns Lochmuller.

2025 NMD4C Basic Research Summer School
2025-05-07 08:00 - 2025-05-08 17:00 (America/New_York)
The annual NMD4C summer school provides lecture-based and hands-on training workshops to neuromuscular trainees in cutting-edge wet lab techniques, while providing an environment for trainees to present their research and network in-person with colleagues and senior investigators from across Canada.

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.

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.

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.

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.

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.
