Scientific Presentations to Families

Many Patient Advocacy Groups associated with AGENDA hold public scientific meetings (mostly now virtual) as well as family meetings which share information about families, scientific updates, and resources that should be shared with not just other scientists but with other families.  Links are below.  

On February 19, 2021, Dr. Samuel Chawner from Cardiff University Presented "A Genetics-First Approach to Dissecting the Heterogeneity of Autism:  Phenotypic Comparison of Autism Risk Copy Number Variants.  The webinar was hosted by AGENDA, The Rare Epilepsy Network and COMBINEDBrain.  You can watch the presentation here.

On April 16, 2021, Dr. PJ Brooks from NCATS presented  a summary of NCATS gene-targeted therapeutic platforms for rare genetic diseases.  The webinar was hosted by AGENDA, The Rare Epilepsy Network and COMBINEDBrain.  You can watch the presentation here.

On May 28th, results from two longitudinal studies on the impacts of COVID-19 on rare genetic disorders associated with NDDs/ASDs were presented together.  The Simons Simplex Collection and UCLA's Caring Through COVID survey results were both presented highlighting the major findings.  You can watch the video here.

Four sessions recorded at their virtual meeting in the summer of 2020

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• Psychiatric Illness and Regression in PMS

• Reducing Relational Stress and Building Resiliency in Ourselves and Our Family, Eileen Devine, LCSW

• Behavioral Strategies for Addressing Challenging Behavior, Dr. Nathan Call, PhD, BCBA-D

• Sleep, Epilepsy and Quality of Life in Phelan McDermid Syndrome, Dr. Jimmy Holder, MD, PhD

2020 Fall Research Series (virtual):

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• October 22:  The Science of Ketogentic Diet

• October 27:  The Science of CBD US Policy Initiatives with Collaborative for CBD Science and Safety

• November 5: Transition from Child to Adult Care in Special Needs

• November 11:  Coping and Behavioral Techniques for Special Needs

• December 8:  Financial Planning for Special Needs

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To register, click here. 

Past webinars:

The Sensory Diet

ASF Day of Learning (virtual)

See the full list of presentations here.

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An introduction to clinical trials for patient advocacy groups, from recruiting patients to working with industry. Features Adam Harman, MD, of the National Institute of Neurological Disorders and Stroke (NINDS).

The TS Alliance hosted educational webinars on a variety of TSC related topics of interest featuring known experts in the TSC community. These free 1-hour presentations include an open question-and-answer period, and can be accessed here.