Canadian Rare Disease Network

North American Cystic Fibrosis Conference
2024-09-26 08:00 - 2024-09-28 17:00 (America/Halifax) | Boston Convention and Exhibition Center, Boston, MA, United States
NACFC provides a collaborative and educational forum for all CF professionals. The educational elements of the meeting program are targeted to physicians, nurses, research scientists, respiratory therapists, physical therapists, nutritionists, social workers, and pharmacists.
This annual meeting brings together scientists, clinicians, and caregivers from around the world to discuss and share ideas on the latest advances in CF research, care, and drug development and to exchange ideas about ways to improve the health and quality of life for people with CF.

2024 Global CMT Research Convention
2024-09-26 08:00 - 2024-09-28 17:00 (America/New_York) | Cambridge, Cambridge, MA, United States
The CMT Research Foundation unites the voices of patients, researchers, pharma companies, and regulatory agencies to develop treatments for CMT.
This event takes place over three days. Thursday and Friday are scientific meetings meant for researchers and scientists working in CMT. Saturday is primarily for patients and their families and caregivers, providing a chance to interact with the research community that is working so hard on their behalf and to better understand the latest in research progress.

4th International Symposium on Arthrogryposis
2024-09-29 08:00 - 2024-10-01 17:00 UTC
The International Symposium on Arthrogryposis provides a platform for learning and exchanging on the clinical management and research in Arthrogryposis Multiplex Congenita (AMC) in the areas of genetics, orthopedics, and rehabilitation. Multisite collaborations are key to advance research initiatives and standardize practice across centers.

🔵26èmes Journées Françaises de l’Epilepsie
2024-10-08 08:00 - 2024-10-11 17:00 (Europe/Helsinki)

International Conference on Newborn Screening 2024
2024-10-09 - 2024-10-10
The 2024 meeting of the International Consortium on Newborn Sequencing (ICoNS) will be held in New York City, USA on October 9 – 10, 2024.
ICoNS is the premier event for connecting with top experts and gaining insights into the frontier of newborn sequencing as screening for ushering in the era of preventive medicine.

21st Biennial ESID Meeting
2024-10-16 08:00 - 2024-10-19 17:00 (Europe/Paris) | france, Marseille, France
The ESID 2024 meeting in Marseille will cover the latest most exciting discoveries in basic and clinical science covering our expanding field, bringing together internationally renowned scientists and clinicians to present and discuss major and exciting developments in diagnosis, clinical management, genetics, immunobiology of inborn errors of immunity, through keynote lectures, symposia, educational workshops, interactive sessions, poster presentations, and meet-the-expert sessions.

EPNS Research Meeting 2024
2024-10-17 08:00 - 2024-10-18 17:00 (Europe/Helsinki)
The EPNS has been organising Research Meetings since 2008. With an aim to enhance research in Paediatric Neurology, the meeting brings together leaders in the field, active researchers and young fellows who are interested to join or to set up research projects. It is a forum for researchers in Paediatric Neurology, where they present their work, ideas, results, creating the possibility for good interaction between researchers and premises for networking, future collaborative research in Europe and beyond. Experienced professionals and young researchers get together, in an environment where interactive, vivid discussions can take place around the presented topics.

DIFFERENT FACES OF RARE AND COMPLEX EPILEPSIES
2024-10-17 08:00 - 2024-10-19 17:00 (Europe/Helsinki)

#ChildHealthCan2024
2024-10-20 08:00 - 2024-10-22 21:00 (America/St_Johns) | St.Johns, Newfoundland, 50 New Gower Street, St.Johns, Newfoundland, A1C 1J3, Canada
Children’s Healthcare Canada and co-hosts, the Janeway Children’s Hospital Foundation and NL Health Services, invite you to join us in picturesque Newfoundland and Labrador from October 20-22, at the St. John’s Convention Centre for their 2024 Annual Conference, Right-Sizing Health Systems for Kids: Navigating to Brighter Futures. For those unable to attend in person, a real-time virtual option will also be available.
Children’s Healthcare Canada is on a mission to Right-Size Child Healthcare Systems. In 2024, they will explore how to pave the way for brighter futures for children, youth, and families within the healthcare systems. Through the collective efforts of their members, strategic partners, and sponsors, they are dedicated to ensuring that all children and youth in Canada have access to the healthcare services they require in a timely manner.
We are thrilled to share that we will be hosting another conference in the Spring of 2025, giving attendees the opportunity to engage in two conferences within a six-month period!
Join us at our upcoming conferences in October 2024 and 2025 as they delve into the concept of right-sizing health systems. Together, they will discuss what it takes to establish a flexible and responsive system that meets the unique needs of children and youth, ultimately leading to improved outcomes for all.
Don’t miss the opportunity to contribute to the conversation on shaping a better future for the health and well-being of our youngest generation. They eagerly anticipate welcoming you to St. John’s, Newfoundland and Labrador, as we work towards a brighter tomorrow for our children and families.

World Orphan Drug Congress 2024
2024-10-22 10:00 - 2024-10-25 18:00 (Europe/Helsinki) | Fira de Barcelona Montjuic, Barcelona, Spain
The World Orphan Drug Congress is the largest, most established European meeting dedicated to orphan drugs. This year the conference will take place in Barcelona, Spain.
From cell & gene therapy, genetic testing, market access to real world evidence, this one meeting covers the whole orphan drugs value chain where science, government and manufacturers all come together to create groundbreaking progress.

The 4th Annual Canadian Children, Youth and Communities (CCYC) Health In | Equity Conference
2024-10-24 08:00 - 2024-10-25 17:00 UTC
The Canadian Children, Youth and Communities (CCYC) In | Equity Conference is an interdisciplinary conference designed to bring together pediatric health and allied health care professionals to address health care inequities from birth to adolescence using a family-centred approach.
This conference explores health equity topics specific to marginalized communities in the Canadian health care system and offers approaches that can be implemented to address barriers in accessing healthcare for under serviced, high-risk and economically disadvantaged children and youth.

Celebrating 15 Years of TACT: A Milestone Event in Boston
2024-10-31
This year marks the 15th anniversary of the TREAT-NMD Advisory committee for therapeutics (TACT). TACT was set up in 2009 by Prof. Volker Straub and Kate Bushby to provide the neuromuscular community with a unique drug development resource. The aim is to give transparent and consistent guidance to the neuromuscular research community in order to advance the treatment of neuromuscular diseases more effectively. Each year the committee meets in the spring and the autumn, and a bespoke panel is assembled to review up to four applications for advice from organisations developing treatments in NMD.The symposium is designed for industry professionals involved in developing treatments for rare neuromuscular diseases and offers a unique opportunity to learn from past mistakes, engage with leading experts, and gain valuable insights into the challenges and opportunities within the field. Attendees can expect interactive sessions and ample opportunities to pose questions to the speakers, fostering meaningful dialogue and knowledge exchange.

Developing Therapies in Rare Neuromuscular Disease
2024-10-31
The symposium is designed for industry professionals involved in developing treatments for rare neuromuscular diseases and offers a unique opportunity to learn from past mistakes, engage with leading experts, and gain valuable insights into the challenges and opportunities within the field. Attendees can expect interactive sessions and opportunities to pose questions to the speakers, fostering meaningful dialogue and knowledge exchange.

Virtual Event: Understanding EDS/HSD+ Symptomology, Diagnoses and Treatment - A Guide for Primary Care Practitioners & Physician Specialists
2024-11-02 08:00 - 17:00 (America/Chicago)
This Conference is for primary care practitioners and physician specialists who encounter patients with complex health issues and chronic pain in their clinical practice, which may or may not be related to Ehlers-Danlos Syndromes or hypermobility Spectrum Disorders (EDS/HSD+).

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

EDS ECHO Summit: Diet and Nutrition
2024-11-02 09:00 - 18:00 (America/Chicago)
The Ehlers-Danlos Society is delighted to welcome you to register for the EDS ECHO Summit: Diet and Nutrition, a virtual event held on November 2, 2024. This event is suitable for community members, their friends, families, and caregivers, as well as healthcare professionals.

Clinical Trials Ontario Conference
2024-11-06 08:00 - 2024-11-07 17:00 (America/Halifax) | Hilton, Toronto, Toronto, Ontario, Canada
The CTO Clinical Trials Conference is a leading Canadian forum to drive innovation in clinical trials, including leaders from the pharmaceutical and medical device industries, academic and healthcare leaders, representatives from patient groups, health charities and research institutions. This annual event provides a unique opportunity for members of our multi-stakeholder sector to collaborate, exchange knowledge and advance clinical trials.

Global Congress of the GANSID: November 8-9, 2024
2024-11-08 08:00 - 2024-11-09 17:00 UTC
GANSID Congress 2024 is the 2nd Congress of the Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) taking place virtually to ensure all clinicians, people with hereditary blood disorders, and global advocates can participate from any part of the world.

Montreal Patient Education Meeting – IN-PERSON
2024-11-09 08:30 - 13:00 (America/New_York)

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.

Fall 2024 Rare Disease Conference
2024-11-26 08:00 - 2024-11-27 17:00 (America/Halifax)

Organoid Symposium & Workshop
2024-12-02 08:00 - 2024-12-03 17:00 UTC
Stem Cell Network is excited to partner with the University of Toronto’s Applied Organoid Core in delivering the 2024 Organoid Symposium: Generation and Applications of iPSC-Derived Organoid Models!
Human pluripotent stem cell (hPSC)-derived organoid research offers unique opportunities to explore human disease, advance personalized drug discovery, and study complex biological processes such as development and disease progression.
This two-day Symposium, offered in a hybrid format, will highlight cutting-edge research and developments in the field of organoids. The symposium includes national and international speakers with expertise in the development and utilization of organoid models across a range of tissue types.

Kabuki Syndrome Foundation: Annual Research Conference
2024-12-05 08:00 - 17:00 UTC

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.
