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Newsletter June 2025
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- Ataxia ACT Meeting, 28-29 October 2025, Amsterdam, the Netherlands
- Join AGI Trial Site Registry
- Save-the-Date for ICAR 2026
- A Webinar on FDA's Four Patient-Focused Drug Development Guidelines
- Training on the Diagnosis and Multidisciplinary Management of Ataxia
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1. Ataxia ACT Meeting, 28-29 October 2025, Amsterdam, the Netherlands
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The Ataxia Advisory Committee for Therapeutics (Ataxia ACT) will now meet on 28–29 October 2025 in Amsterdam. Applications are still open!
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Pre-application deadline: 1 July 2025
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Two review slots are currently available
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Are you working on a preclinical or clinical ataxia therapy development program?
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Get academic expert input to strengthen your strategy and take it to the next level.
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Ataxia ACT offers tailored, multi-disciplinary reviews to help overcome common challenges in ataxia drug development—from validating therapeutic targets and evaluating preclinical data to optimizing trial design and regulatory strategy.
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Our committee includes unbiased experts in science, medicine, regulatory agencies, and patient advocacy. We support companies at all stages, from preclinical to clinical, with practical, actionable feedback. Join us in advancing therapies that make a real difference to people living with ataxia.
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2. Join AGI Trial Site Registry
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Sites seeing ataxia patients are welcome to join the AGI Trial Site Registry (AGI-TSR). Set up by the Ataxia Global Initiative, the AGI-TSR is a global registry of clinical ataxia centers/ataxia sites (with currently 47 sites worldwide registered).
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Why register? Being part of the AGI-TSR connects your site to the wider ataxia research landscape. It helps make your site visible for future collaborations, clinical trial opportunities, and data-sharing initiatives. It’s also a great way to contribute to a coordinated, global effort to advance care and treatment for people living with ataxia.
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If your center is engaged in clinical care or research for ataxia, this is a great opportunity to connect, contribute, and collaborate.
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👉 Join the AGI-TSR and help advance ataxia trial readiness!
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3. Save-the-Date for ICAR 2026
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Ataxia UK, National Ataxia Foundation (NAF), Friedreich’s Ataxia Research Alliance (FARA), and Ataxia Global Initiative (AGI) are pleased to announce the date for the next International Congress for Ataxia Research (ICAR).
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ICAR 2026 will take place at the Renaissance Atlanta Waverly Hotel & Convention Center in Atlanta, Georgia, U.S. Please save the date for November 10-13, 2026.
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ICAR 2026 will be the place to share the latest ataxia research, including updates on Friedreich's ataxia and SCAs 1, 2, 3, 6, 7, and more. Attendees will hear developments in novel treatment approaches, clinical trial results, and scientific debates from leading ataxia researchers. There will also be the opportunity to network with academic and industry leaders. Special sessions and events are planned for junior researchers.
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4. A Webinar on FDA's Four Patient-Focused Drug Development Guidelines
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Please watch online the webinar
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A Practical Guide to navigate the FDA's Four Patient-Focused Drug Development Guidelines by Céline Desvignes-Gleizes, Mapi Research Trust (MRT),
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organized by the AGI, Treat-HSP Network, ERDERA, and ERN-RND.
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How can you make sure your clinical trial captures what really matters to patients? This webinar walks you through practical steps to ensure that patient voices shape the design and evaluation of your rare disease trials.
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5. Training on the Diagnosis and Multidisciplinary Management of Ataxia
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Spanish speaking healthcare professionals working with ataxia patients are cordially invited to register for the upcoming
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International Course on the Diagnosis and Multidisciplinary Management of Ataxia, on-site, Santiago, Chile, 28–30 August 2025.
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The course will be conducted in Spanish. This is part of INMOV’s (National Institute of Movement Disorders in Santiago, Chile) mission to bring high-level knowledge in ataxias to professionals in South and Middle America. This training has been endorsed by the AGI Steering Committee.
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The target audience includes healthcare professionals working in neurological rehabilitation, both in adults and children. This includes neurologists, physiotherapists, speech and language therapists, occupational therapists, nurses, psychiatrists, rehabilitation physicians, geneticists, psychologists, nutritionists, and other related professionals.
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Please see more information on the registration page.
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Become an AGI Member or Partner
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Become an AGI member or partner!
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The application for membership (as individual) and partnership (as organization) of the AGI is available on our website. More information about membership and partnership can be found in our charter.
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As a member, you can join the AGI working groups, nominate and vote for new members for the AGI Steering Committee, and attend our business meetings.
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