3rd European Congress of Neurology and Neuropsychiatry
2025-02-17 08:00 - 2025-02-18 17:00 (Europe/Helsinki)

Electrodiagnostic Patterns in Immune-Mediated Neuropathies
2025-02-20 16:00 - 17:00 UTC

CAPA Webinar Physical Activity in Arthritis
2025-02-22 16:00 - 17:00 (America/New_York)

2025 Clinical Trials Training Summit
2025-02-24 08:00 - 2025-02-26 17:00 (America/Chicago)

The Undiagnosed Hackathon: Driving Diagnosis Through Global Collaboration
2025-02-26 11:00 - 12:30 (America/New_York)

From Grassroots to Global: Growing Momentum Towards a WHA Resolution on Rare Diseases
2025-02-27 08:00 - 17:00 (Europe/Paris)
Join RDI for a webinar on the global movement behind the efforts to advocate for a WHA Resolution on Rare Diseases

Rare Moments: Virtual Storytelling Evening
2025-02-27 19:00 - 21:00 (America/New_York)
Don’t miss Rare Moments: Virtual Storytelling Evening
📅 February 27 @ 7:00 p.m. ET
Register: https://bit.ly/4ht5Ox9
It will be an inspiring evening of storytelling as families from across #Canada come together to share their experiences living with Duchenne #musculardystrophy.

Rare Disease Day
2025-02-28
Rare Disease Day is the globally coordinated movement on rare diseases, initiated in 2008 and led by EURORDIS and its 70+ national alliance patient organization partners working towards
equity in social opportunity, healthcare, and access to therapies for people living with a rare disease.
Rare Disease Day is held on the last day of February, the rarest day of the year, to highlight the challenges faced by 300 million people worldwide living with a rare disease. Over the last 17 years,
Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, multicultural, and multi-lingual, but united in purpose. Rare Disease Day speaks for 300 million people worldwide living with a rare disease, as well as their families and carers. Events and activities take place in over 100 countries, banging the drum and
building momentum for the rare disease community. The campaign works in partnership with individuals and patient groups, policymakers, governments, foundations, NGOs, pharmaceutical and biotech companies around the world to raise awareness of rare diseases. It uses innovative approaches to build community, create empathy and advocacy for those with rare diseases.

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

Rare Disease Day and World Birth Defects Symposium
2025-02-28 09:00 - 13:00 (America/New_York)
Join on February 28, 2025, for the Rare Disease Day and World Birth Deficit Symposium, an event dedicated to raising awareness and fostering meaningful discussions on the challenges faced by individuals and families affected by rare diseases. This symposium will bring together patients, caregivers, healthcare professionals, and community advocates to share experiences, promote equity, and drive change.

CORD Rare Disease Day 2025 Webinar
2025-02-28 12:00 - 13:00 (America/New_York)
CORD is hosting a special webinar on Friday, Feb 28 from 12-1pm EST so that everyone from across Canada can tune in and help put that funding to work. Here’s what they’ll discuss: – Ending the diagnostic odyssey with CHEO’s ThinkRare – Treating and tracking rare diseases at BC Cancer – Caring for complex kids and adults at BC Children’s Hospital – The challenge of treating adults with SMA in Manitoba – Measuring the socioeconomic impact of rare diseases on families and health systems

Celebrate Rare Disease Day: Advancing Clinical Trials Together
2025-02-28 12:00 - 13:30 (Europe/Paris)
On February 28th, in recognition of Rare Disease Day, the European project DREAMS (www.dreamshorizon.eu) invites you to a thought-provoking online webinar: “Clinical Trials in Focus: Innovations and Patient Perspectives in Rare Diseases”. Join leading experts as they explore advancements in clinical trial methodologies, outcome measures, and lessons learned from research in muscular disorders.

Thriving with Duchenne
2025-02-28 13:00 - 14:00 (America/Denver)

Rare Disease Day 2025: Unlocking Hope for Rare Diseases
2025-03-01 09:00 - 13:00 (America/Denver)
On Saturday March 1st, the Rare Disease Network of Alberta (rDNA) will be hosting Rare Disease Day 2025: Unlocking Hope for Rare Diseases in Edmonton. Members from their team will be attending!

RQMO 2025 International Rare Disease Day
2025-03-01 10:00 - 17:00 (America/New_York)
To celebrate International Rare Disease Day, the RQMO is organizing an activity on March 1, 2025 at the Sandman Hotel located at 999, rue de Sérigny in Longueuil.
The event will take place from 10 a.m. to 3 p.m. and will be followed by a networking cocktail from 3 p.m. to 5 p.m.
The activity will be presented in hybrid, you will have the possibility to attend in person or by zoom.

RE(ACT) Congress and IRDiRC Conference
2025-03-05 08:00 - 2025-03-07 17:00 (Europe/Brussels) | Brussels, Belgium, Brussels, Belgium
The RE(ACT) Congress and IRDiRC Conference 2025, held jointly by the BLACKSWAN Foundation, the International Rare Diseases Research Consortium (IRDiRC) and the European Rare Diseases Research Alliance (ERDERA). From March 5th to 7th, 2025, we will gather in the vibrant city of Brussels (Belgium) for an unparalleled exchange of knowledge and ideas.
The RE(ACT) Congress will be celebrating its 8th edition, and this convergence serves as a beacon for scientific innovation. Our assembly is comprised of visionary leaders, distinguished experts, and emerging talents from diverse scientific domains, converging to unveil groundbreaking research, foster dialogue, and shape policies crucial to rare disease research.
This edition of RE(ACT) Congress and the 6th IRDiRC in person Conference, is in partnership with the European Rare Diseases Research Alliance (ERDERA, planned to start in September 2024), EURORDIS-Rare Diseases Europe, and Rare Diseases International (RDI), and symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge.

Webinar - Initiating Clinical Trials in Canada
2025-03-05 12:00 - 13:00 (America/New_York)

ALS Clinical Trials Unboxed
2025-03-06 13:00 - 14:00 (America/Denver)
Join ALS Canada, on March 6 at 1:00 pm ET, for ALS Clinical Trials Unboxed. In this webinar, Dr. Lauren Kett, Medical Director of Clinical Development at Amylyx Pharmaceuticals will present on the Phase 1 LUMINA study, an investigational antisense oligonucleotide (ASO) targeting calpain-2 for the potential treatment of ALS.

Navigating the Transition from Pediatric to Adult Neuroimmunology Care
2025-03-06 14:00 - 15:00 (America/New_York)
This webinar will provide an overview of the transition from pediatric to adult medical care, featuring insights from a pediatric neurologist, social worker, and a neuropsychologist.
Topics will include maintaining continuity of care, managing complex medical conditions, self-advocacy in healthcare settings, and addressing social and emotional considerations. The discussion aims to support patients, families, and caregivers in navigating this important transition effectively.

Empowering Patients 2025: A Cell and Gene Therapies Summit
2025-03-12 08:00 - 2025-03-13 17:00 (America/Denver)
This free, virtual event in two half-day sessions offers educational discussions for foundation leaders, patients, and caregivers to better understand #GeneTherapy and #CellTherapy.

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

NMOSD in sub-Saharan Africa
2025-03-17 18:00 - 19:30 (Europe/Paris)
The experts will provide insights and answer questions about the prevalence and incidence of NMOSD, diagnostics, available treatments, immunizations, clinical trials, and more. Patients, caregivers, clinicians, researchers, and advocates from around the world are invited to attend.
Live participants will have the opportunity to ask questions directly to the experts. The webinar will be recorded and made available for replay on TSF’s YouTube channel.

Webinar on “Neurogeriatric Aspects of Huntington’s Disease and Chorea”
2025-03-18 15:00 - 16:00 (America/Chicago)
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).

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.

Peripheral Nerve Imaging with Focus on Inflammatory Neuropathies
2025-03-20 16:00 - 17:00 (Europe/Paris)

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

Save-The-Date: RareKids-CAN Virtual Information Session
2025-03-24 08:00 - 11:00 (America/New_York)
During this information session, you will gain an overview of RareKids-CAN, build connections within the community, and more!

AIHA Awareness Day 2025
2025-03-25 07:00 - 15:00 (America/New_York)
AIHA Awareness Day 2025 brings together patients, care partners, physicians, researchers, industry leaders, and legislators for virtual presentations that honor and support the journeys of those affected by Autoimmune Hemolytic Anemia and other Acquired Hemolytic Anemias. This day is a powerful call to action to inspire us all to champion hope, understanding, and awareness.

Dragon Claw Friends Webinar - Breaking Down Barriers – Are Patients Aware of Their Autoimmune Disease Treatment Options?
2025-03-27 10:00 - 11:00 UTC
Despite significant advancements in the treatment of autoimmune diseases, many patients remain unaware of their options. Social media platforms are filled with stories of people struggling with uncontrolled symptoms—so why aren’t these breakthroughs reaching those who need them most? To explore this issue, Dragon Claw Charity Australia, in collaboration with CaPPRe, has conducted research into the awareness gap among patients with rheumatology, dermatology, and gastroenterology-related autoimmune diseases.

Navigating Life with Dysimmune and Inflammatory Neuropathies: Q&A Session on Quality of Life and Management
2025-03-27 16:00 - 17:00 (Europe/Paris)
