ERDERA Joint Transnational Call 2025 Information Webinar
2024-12-17 14:00 - 16:00 (Europe/Paris)
This Webinar will:

Provide general information on the call, including its scientific goals, administrative aspects, support services, and patient engagement strategies.
Address your questions through two dedicated Q&A sessions.

ERDERA Joint Transnational Call 2025 Extended Information Webinar
2025-01-14 14:00 - 16:00 (Europe/Paris)
The European Rare Diseases Research Alliance (ERDERA) invites you to the Joint Transnational Call (JTC) 2025 Extended Information Webinar.
Objectives of this webinar:
The webinar scheduled for January 14th aims to provide educational and preparatory support to applicants at the pre-proposal stage, focusing on key elements that enhance the quality of their submissions. The objectives include:
Inform applicants about lessons learned about the evaluation.
Guide applicants with key translational, regulatory, data managing, and methodological considerations for drafting strong pre-proposals.
Address your questions through dedicated Q&A sessions.

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.

Challenges in the Diagnosis and Treatment of Inflammatory Neuropathies
2025-01-23 16:00 - 17:00 (Europe/Paris)
Delivered by Dr. Filip Eftimov (University Medical Center of Amsterdam, the Netherlands) & Jean-Philippe Plançon (EPODIN – European Patient Organisation for Dysimmune and Inflammatory Neuropathies, France), January 23rd 2025 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology. READ CAREFULLY please: By registering and attending the webinar you consent to the recording of the webinar and its later diffusion through the EURO-NMD websites using an YouTube Channel

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.

Update on Guillain-Barré Syndrome Guidelines
2025-01-30 16:00 - 17:00 (Europe/Paris)

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.

Multifocal motor neuropathy (MMN): diagnosis, treatment and update on biomarkers
2025-02-13 16:00 - 17:00 (Europe/Paris)

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)

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

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 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.

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.

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.

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).

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

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)

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.

RDI: Leveraging the EML for Access to Rare Disease Treatments
2025-04-10 14:00 - 15:00 UTC
The WHO Essential Medicines List (EML) is a critical instrument for advancing Universal Health Coverage (UHC) by ensuring equitable access to essential medicines. However, its role in rare disease treatment remains under-recognized. This webinar will explore how the EML can serve as a powerful tool to improve access to treatments for persons living with a rare disease (PLWRD) at both global and national levels.
Webinar Objectives:

Gain a deeper understanding of the WHO Essential Medicines List and its significance for rare diseases
Learn about the findings from RDI’s Essential Medicine Working Group on challenges, best practices, and opportunities for regarding the application process of EML
Hear about call-to-action to enhance global and national access to essential medicines

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.
