As you may have seen on our social media posts earlier this spring, we are launching an AGSAA Contact Registry in order to:

• Stay better connected with the AGS community.

• Take a proper census to raise awareness about AGS families around the world.

• Help families access valuable information including updates related to AGS, projects and opportunities, clinical trials, resources, event invitations, and more.

Ever wondered how many people in the world are living with AGS? Or with your AGS type? Or which countries our community spans? This is how we start to answer these questions and deepen connections. Make your family count by taking a few quick minutes to join the registry today and stay in the know as we continue on this journey together. This is how we - as AGS affected individuals, parents, allies, and advocates - can help to accelerate research and raise awareness while the disease-specific literature takes years to accurately reflect what we are all living through now.

The contact registry will help us spark and support progress by being as organized as possible. Here are some exciting opportunities and projects on the horizon and why we need to use this tool to help show the world that our community is Always Growing Stronger, Together:

• 1-2 upcoming clinical trials in development which will need patient education, recruitment, and enrollment support from AGSAA and input from our global community to make the experience as equitable, inclusive, and as patient-centered as possible.

• Key research updates set to be published by CHOP in the next 6+ months which will help to validate our experiences in a new light and bring forth additional opportunities for advocacy.

• Multiple upcoming opportunities to collaborate with partners, including

  • a global qualitative study to spotlight hurdles faced by AGS families

  • prep for an FDA patient listening session

  • additional advocacy for JAKI access

  • and more!