AGENDA | Alliance for Genetic Etiologies in Neurodevelopmental...

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The mission of AGENDA is to improve outcomes for individuals with all forms of autism by fostering a genetics-first approach to autism and neurodevelopmental disorders research, and by strengthening collaborations among organizations representing genetically-defined disorders associated with neurodevelopmental disorders and autism.

Cooperation

Cooperation across groups and sharing of best practices, challenges, obstacles and how they were overcome. We do this through biweekly meetings. Members are transparent about their ongoing activities and what they need from each other. This avoids duplication of efforts and helps each organization focus on the families, rather than issues that are of concern across groups.

Collaboration

Collaboration on grants, maintenance and expansion of group registries, and issues that affect people and families across disorders such as gastrointestinal and sleep difficulties, and understanding how the pandemic has affected these families. Access and join our Google Groups page below and see our Presentations for more information.

Communication

Improved Communication to stakeholders around issues that are cross-cutting among genetic disorders. This includes sharing novel ways of working with families, advocacy, and holding joint information sharing sessions that are available to multiple communities.

Coordination

Coordination of activities to improve clinical care for families of rare genetic disorders, regardless of the genetic diagnosis itself, starting from preclinical research and moving to clinical trials.

PRESENTATIONS

GET INVOLVED

WEBINARS

American Academy of Pediatrics Meeting 2023 ->

We are on Google Groups! If you are involved with a Patient Advocacy Group, Organization, Institution that helps families with rare genetic disorders associated with NDDs and autism, or a researcher, scientist or clinician who helps families and wants to follow along with our conversation, please request permission to join us for regular updates and a schedule of zoom meetings. If you have problems with the system, email Alycia Halladay at ASF: ahalladay@autismsciencefoundation.org

CANDID GI INITIATIVE

CANDID (Consortium for Autism, Neurodevelopmental Disorders, & Digestive Diseases) is a newly-formed, multi-disciplinary collaborative organization that strives to bring together researchers, medical professionals, and patient advocacy groups around the issue of gastrointestinal disorders in NDDs. Gastrointestinal symptoms are experienced by many people with NDDs -- including those with rare genetic diagnoses -- which can have a significant impact on overall quality of life. However, the current diagnostic tools, therapies, and clinical guidelines for managing these symptoms in the general population are often insufficient or inappropriate for patients with NDDs.

CANDID is working to identify the most important GI-related issues in NDD populations, with the goal of educating medical communities and encouraging research that will lead to better therapies, better guidelines and assessments, and a better quality of life for people with NDDs and their families.

UNITE US

What is ?

Over a decade ago, Unite Us pioneered the first closed-loop referral platform tailored specifically for veterans and their families. Today, leveraging our comprehensive suite of software and services, we unite more than 1,000 customers across the country. Our mission is to facilitate accountable connections to care for anyone in need, empowering government, healthcare, and local community-based organizations to thrive and focus on what they do best. Through cutting-edge technology, we seamlessly bring communities together, predicting, delivering, and facilitating payment for community-based social care. Our platform encompasses more than one million services, boasting the industry’s largest outcome-focused community network. Our award-winning experience distinguishes us, positioning Unite Us as the unparalleled partner for social care.