Webinars Library
Webinars hosted by RASopathies Network
We welcome webinar topics ideas!
Please email us at info@rasopathiesnet.org
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Webinar: Cure ID’s RASopathy Survey
CURE ID is a platform to collect information about use of repurposed drugs. Think of it as a ‘treatment registry’. The FDA, NIH/NCATS, and C-Path have teamed up with clinicians and patient advocates to generate a survey to track use of medications, like MEK and mTOR inhibitors. Data about the indication the drug was used for, the side effects, how long the drug was used, and other possible impacts can be aggregated and serve as a resource to share or analyzed further to gain therapeutic insights. We host Shira Strongin (NCATS) to walk through the CURE ID platform and what information is collected and we hear from Honey Sayler (Parent Advocate), and Samantha Spires (Parent Advocate) about their experiences accessing and using a repurposed drug for a RASopathy condition. CURE ID RASopathies Survey can found here: https://cure.ncats.io/home Contact RASopathies Network with questions: info@rasopathiesnet.org
Link to Webinar: Tethered Cord: Implications for the RASopathies with Petra Klinge, MD and Patricia Weltin
Petra Klinge, MD, is an internationally renowned general neurosurgeon specializing in the surgical treatment of patients with brain tumors, hydrocephalus and Alzheimer’s disease, pediatric diseases and treatment of congenital diseases like Chiari and spinal malformations, talks about occult tethered cord and its effects. Patricia Weltin, parent advocate, and CEO/Founder of Beyond the Diagnosis, brought to our attention the prevalence of tethered cord among a number of rare diseases. Due to the presence of tethered cord among people with a RASopathy, particularly Costello syndrome, as well as a list of a list phenotypical issues that are shared with the RASopathies, learning about what tethered cord is, how it can affect the body, how it is treated, and red flags to rule it out can be important for individuals affected by a RASopathy.
Link to Webinar: RASopathies: Study of Brain and Cognitive Development in Children with Noonan syndrome and NF1, by Tamar Green, MD, Assistant Professor of Psychiatry and Behavioral Sciences at Stanford School of Medicine, and Principal Investigator at BRIDGE Lab, which stands for BRain Imaging, Development and GEnetics,
Dr. Green provides an update on her lab’s study of brain and cognitive development in children with Noonan syndrome and NF1.
Link to Webinar: An Update on the Clinical Trial Using Vosoritide for Growth in Noonan Syndrome (and other RASopathies), by Andrew Dauber, MD, MMSc, Chief of Endocrinology, Children’s National Hospital, Washington, DC.
If you have questions about joining the Study, contact adauber@childrensnational.org
Link to Webinar: Exploring MEK inhibitors: What are they and what are the common side effects in pediatric patients, by Tara McKeown, MN NP‐Pediatrics, Nurse Practitioner, Neuro‐Oncology, The Hospital for Sick Children, Canada, introduced by Andrea Cote
Link to Webinar: Feeding Problems in RASopathies by Dagmar Tiemens, MSc, MScEd, with Jos Draaisma, MD, PhD, and comments from Katie Palmer, family advocate for NS
Link to Webinar: Bleeding issues in RASopathies with Drs. Pawar and Briggs. June 19, 2022
Link to Webinar: What is NCI’s RASopathies Natural History Study? with Dr. Gina Ney MD, PhD, February 27, 2022
Link to Social Behavior in RASopathies: Are We Missing Areas of Strength?, by Alli Foy, PhD, October 24, 2021
Link to SECOND WEBINAR with Drs. Gelb, Roberts and Stevenson on the COVID19 vaccine as it relates to RASopathies, August 15, 2021
Link to Webinar with Dr. Itkin on lymphedema in Noonan syndrome which may inform other RASopathies as well, April 25, 2021
Link to Webinar with Drs. Gelb, Green, Gripp and Stevenson on the COVID19 vaccine as it relates to the RASopathies, January 24, 2021
Link to Webinar with Dr. Dauber about his growth hormone study, December 2, 2020
Link to Webinar with Dr. Green about Strategies for Emotional Health during COVID19, March 23, 2020
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Webinars by partners related to RASopathies:
BRIDGE Lab community webinar with Dr. Patel-Sanchez: GI challenges present in Noonan Syndrome
Dr. Namrata Patel-Sanchez is a pediatric gastroenterologist practicing in Oakland, CA at the University of California Benioff Children’s Hospital. She specializes in nutrition and currently leads the pediatric enteral feeding clinic, which cares for patients with complex medical needs with gastrointestinal disorders. She also cares for patients with malnutrition, intestinal failure, and fatty liver disease
