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Events

Welcome to our Events Calendar! Stay up-to-date with the latest happenings in the rare disease community in Canada and beyond. From webinar and conferences to workshops and other events, our calendar is your one-stop destination for all rare disease-related happenings. Explore upcoming events, mark your calendar, and join as we work together to make a difference in the lives of those affected by rare diseases.

Watch our walkthrough videos in English and French for guidance navigating the calendar HERE. 

LGBTQIA+ Affirming Prenatal Genetic Counseling

Join PhenoTips live on June 26th from 12 - 1 p.m EST, for the 29th installment of PhenoTips’ Speaker Series, “LGBTQIA+ Affirming Prenatal Genetic Counseling” LGBTQIA+ Affirming Prenatal Genetic Counseling is a discussion and interactive Q & A with Rozalia Valentine, Genetic Counselor at Boston’s Children, and Chelsea Wagner, Lead Genetic Counselor at BillionToOne, hosted […]

6th Fibrodysplasia Ossificans Progressiva (FOP) Drug Development Forum

Elite Hotel Tower Marina Stockholm, Sweden

The Drug Development Forum (DDF) brings together biotech and pharmaceutical companies, academic researchers and clinician scientists to collaborate and advance Fibrodysplasia Ossificans Progressiva (FOP) research. It's an opportunity to discuss emerging FOP data and highlight gaps in our understanding of FOP disease pathogenesis that could offer new therapeutic options. The June 2024 event offers both […]

IFPA Conference the 7th World Psoriasis & Psoriatic Arthritis Conference

Stockholm Waterfront Congress Centre Nils Ericsons Plan 4, Stockholm, Sweden

Established in 2006, the IFPA Conference (also known as the World Psoriasis & Psoriatic Arthritis Conference) provides a unique, cross-specialty platform. Medical and health professionals present frontline clinical research in dermatology, rheumatology and beyond. Delegates can explore psoriatic disease from different perspectives by networking with patients and industry representatives in attendance. The IFPA conference calls […]

Gene Therapy Webinar Series: Episode 10 – Genetic therapies and therapy developments for SMA

Jan Kirschner (Professor of Pediatric Neurology) has been joint coordinator of the German network for neuromuscular disorders MD-NET (www.md-net.org) since 2008. He has been involved in planning and conducting several multicentre clinical trials. He was responsible for the coordination of a large multi-centre, placebo-controlled MD-NET trial in Duchenne muscular dystrophy. Jan has established the Care […]

State of the art of clinical stage gene therapies for Leukodystrophies – EURO NMD

Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). Dr. Caroline Sevin is a pediatric neurologist at Kremlin Bicêtre hospital. She leads the French reference center for leukodystrophies in children at Kremlin […]

Questions, Answered: Genetic Counselling & Autoinflammatory Diseases

Have you ever wondered what genetics counselling is, and how it works? As part of its new Questions, Answered series, the Canadian Autoinflammatory Network - Réseau Autoinflammatoire Canadien has invited Montreal Clinical Research Institute's genetic counsellors Valérie Poulin and Géraldine Gosse to teach autoinflammatory patients about genetics counselling and autoinflammatory diseases. During the presentation, Valérie and Géraldine will present […]

ALS Clinical Trials Unboxed

On Thursday, July 4, at 1 p.m. ET, join ALS Canada for our next ALS Clinical Trials Unboxed webinar to learn more about ongoing ALS clinical trials. In this webinar, Dr. Richard Robitaille from the Université de Montréal will present on an investigator-initiated trial of darifenacin.

The Global Cell & Gene Therapy Summit

Boston Marriott Newton Hotel Boston, MA, United States

Cell and gene therapy represent intersecting fields of biomedical research with the shared goal of treating, preventing, or curing diseases. These approaches are aimed at understanding the underlying causes of various diseases, ranging from rare and complex conditions to those with genetic or acquired origins. This rapidly expanding treatment approach is poised to address significant […]

Webinar: Rare Barometer survey on the impact of rare diseases on everyday life

On Wednesday 10 July, Rare Barometer, the global survey initiative of EURORDIS – Rare Diseases Europe, will launch a new survey on the impact of rare diseases on everyday life. The survey will be open to all people living with any rare disease and their family members worldwide and will be available in 25 languages, from 10 […]

North America Rare Diseases Summit 2024

Radisson Blu Aqua Hotel Chicago, IL, United States

This event brings together leading researchers, healthcare professionals, patient advocates, policymakers, industry experts, and rare disease patients and families. The summit emphasizes the power of collaboration and solidarity in facing rare diseases.

PRISMS Leads the Way To Support Those Living with Smith-Magenis Syndrome at 12th International Conference

Hyatt Regency Dallas Dallas, TX, United States

PRISMS 12th International Conference is the largest conference specifically focused on Smith- Magenis Syndrome (SMS) in the world. The conference goal is to educate and share information about SMS while providing opportunities for engagement and community amongst SMS families and professionals. This educational and family support multi-day event is a critical program for the SMS […]

Tell Me More: Why is Obtaining a Diagnosis Challenging?

We invite you to our next UDNF Tell Me More Lecture Series on Thursday, July 11th  at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted Waters of an Ultra Rare Disease. Are you an undiagnosed patient who has been on a long diagnostic odyssey? Come join us for a discussion […]

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