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The AGSAA and Transposon Therapeutics, Inc. Collaborate To Empower Patients to Make Informed Decisions About Participation in Clinical Trials.

The Aicardi Goutieres Syndrome Advocacy Association (AGSAA) and Transposon Therapeutics, Inc. have joined hands in a new collaboration to educate patients about the new therapeutic opportunity presented by Transposon, incorporate patient needs and preferences into the design of future trials, and recruit for their active clinical trial in Europe. The collaboration strives to prioritize patient perspectives and elevate their voice throughout the trial design process, promoting greater inclusivity in clinical trials for Aicardi-Goutieres Syndrome.

This collaboration will help to educate and inform families about trial procedures, details, and aims using plain language. By bringing together the expertise of both organizations, we can accelerate the development of new treatments for AGS and enhance the care provided to patients and their families.

"We are thrilled to team up with Transposon Therapeutics, Inc. to help AGS families understand new opportunities," said Patrick Winters, Director of Research at AGSAA. "By working together, we can ensure that patient needs and desires are taken into account during clinical trial design and that families have the information they need to make informed decisions about participation in clinical trials."

To get involved and be notified about future developments, interested parties can inquire about the Transposon TPN-101 clinical trial, join the AGSAA patient registry, or subscribe to our mailing list. By working together, we can make a difference in the lives of those affected by Aicardi-Goutieres Syndrome.

For more information, please contact the AGSAA at info@agsaa.org or view the clinical trial details TPN-101 in Aicardi-Goutières Syndrome (AGS).

The Aicardi Goutieres Syndrome ECHO Program

We are excited to announce the development of an Aicardi Goutieres Syndrome (AGS) ECHO program, aimed at democratizing knowledge and expertise for caring for individuals affected by AGS. AGS is a rare and complex genetic disorder that affects the brain, immune system, and many organ systems, leading to severe and often life-threatening symptoms. Creating a platform for universal learning is crucial to ensure that the latest knowledge and understanding regarding the treatment of AGS is disseminated to all communities.

The AGS ECHO program is a virtual learning platform that connects healthcare professionals across the globe to share knowledge, best practices, and strategies for managing AGS patients. We are currently seeking physicians who have experience in the diagnosis and management of AGS to join us as faculty members in shaping and planning this program.

As a faculty member, you will have the opportunity to share your expertise and experiences with other healthcare professionals from around the world, help shape the curriculum of the AGS ECHO program, and collaborate with other experts in the field to improve the care and outcomes of individuals affected by AGS.

We are looking for physicians who:

  • Have experience in diagnosing and managing patients with AGS

  • Are passionate about sharing their expertise with other healthcare professionals

  • Are committed to improving the care and outcomes of individuals affected by AGS

  • Can commit to participating in regular ECHO sessions and providing feedback on the program

If you are interested in joining us as a faculty member for the AGS ECHO program, please email us at echo@agsaa.org with your name, contact information, and a brief statement of your experience and interest in AGS. If you are a family affected by AGS, you can nominate a healthcare professional to be invited to participate or join the faculty developing the program.

We believe that by bringing together the expertise of healthcare professionals from around the world, we can improve the care and outcomes of individuals affected by AGS. We look forward to working with you to make this a reality.

Sincerely,

Patrick Winters
Program Coordinator
AGS ECHO Program

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