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.  

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).