Webinars Library
Webinars hosted by RASopathies Network
We welcome webinar topics ideas!
Please email us at 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:
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