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Myhre Syndrome Foundation
เข้าร่วมเมื่อ 15 ก.พ. 2021
Myhre Syndrome Foundation (MSF) was founded in 2019 as a grass roots effort aimed at providing resources and advocacy for Myhre families and to support research funding and education within the medical community.
Myhre Syndrome Foundation is a 501(c)(3) non-profit charitable organization.
Myhre Syndrome Foundation is a 501(c)(3) non-profit charitable organization.
Myhre Research Family & Patient Q&A Session 5
In this session, we talk about stenosis and fibrosis, plus take questions from the community on neurodevelopment and autism, GI, and more!
#myhresyndrome #myhre
#myhresyndrome #myhre
มุมมอง: 242
วีดีโอ
Myhre Research Family & Patient Q&A Session 4
มุมมอง 225หลายเดือนก่อน
In this session, we talk about the SMAD4 gene and break it down into a simple analogy, plus more on biomarkers and the patient registry.
SMAD4 & Myhre Syndrome - Think Factory Manager!
มุมมอง 74หลายเดือนก่อน
SMAD4 is complex, so we've helped explain its role and how the Myhre syndrome mutation affects the body. From now on, think factory manager! #myhresyndrome #myhresyndrome #smad4
Philadelphia MSF Conference 2024 Highlights
มุมมอง 672 หลายเดือนก่อน
See the highlights of our first in-person conference in Philadelphia in July 2024. A fabulous weekend, making connections and learning from global experts. You can see the full conference talks at th-cam.com/play/PLqmYR_ZfAInGwdk97QJvTmRGPuIWehR2w.html #myhre #myhresyndrome
MSF In-person Conference 2024 - Sunday
มุมมอง 1232 หลายเดือนก่อน
Join us for the recording of the live stream of the first in-person Myhre Syndrome Foundation conference at the Children's Hospital of Philadelphia in July 2024. You will find the presentations at the following times: Family Panel: Education, Guardianship, Long-Term Planning 57.20 - Stella Hartono, MD, PhD - The Immune System 1 hr 32 - Joy Bress, PT & Kara Masse, PT - Empowering Movement: Physi...
MSF In-person Conference 2024 - Saturday Part 1
มุมมอง 5922 หลายเดือนก่อน
Join us for the recording of the live stream of the first in-person Myhre Syndrome Foundation conference at the Children's Hospital of Philadelphia in July 2024. You will find the presentations at the following times: Angela Lin, MD - Myhre Syndrome Potpourri: Patterns and Phenotypes 45.00 - Lois Starr, MD, PhD - Myhre Syndrome: Genetics 101 1 hr 34 - Nina Thomas PhD - Neuropsychological Evalua...
MSF In-person Conference 2024 - Saturday Part 2
มุมมอง 2552 หลายเดือนก่อน
Join us for the recording of the live stream of the first in-person Myhre Syndrome Foundation conference at the Children's Hospital of Philadelphia in July 2024. You will find the presentations at the following times: Aaron Dorfman, MD - Stickers and Gel: Heart Disease in Myhre Syndrome (PART 2) 25.16 - Mersedeh Rohanizadegan, MD, MPH - Myhre Syndrome and Cancer 45.42 - Monica Mainigi, MD - Int...
Myhre Research Q&A Session 3
มุมมอง 3022 หลายเดือนก่อน
In this video, you'll learn more about how the Myhre Syndrome Foundation developed its research roadmap, discuss our gene editing RFP, and see details on a biomarker study.
Myhre Research Q&A Session 2
มุมมอง 7773 หลายเดือนก่อน
This is our monthly drop-in, where we update you on research plans and take your questions. This month, we dive into the details on SMAD4.
Myhre Research Q&A Session 1
มุมมอง 1254 หลายเดือนก่อน
In this video, you'll learn more about the tools Myhre Syndrome Foundation is creating to advance research and accelerate treatment discovery.
Cell Models For Myhre Syndrome
มุมมอง 544 หลายเดือนก่อน
Check out our new video on Cell Models. Why study cells? How are Myhre cells different? What are the different types of cell models? Find out here!
Myhre Syndrome Research: The Road to Treatment
มุมมอง 845 หลายเดือนก่อน
We're equipping ourselves with the tools to accelerate Myhre syndrome research to find treatments and a cure. Learn more at www.myhresyndrome.org/research-updates
Gut Health and Microbiomes Prof. Jack Gilbert - 2023 MSF Virtual Conference
มุมมอง 4779 หลายเดือนก่อน
Professor Jack A. Gilbert gives an overview of gut health and microbiome and what you can do to help make your gut healthy!
Myhre Syndrome Research Update Dr. Mark Lindsay - 2023 MSF Virtual Conference
มุมมอง 1849 หลายเดือนก่อน
Dr. Mark Lindsay talks you through progress on the Myhre mouse model.
Navigating and Thriving in School Prof. Christine Peterson - 2023 MSF Virtual Conference
มุมมอง 529 หลายเดือนก่อน
Navigating and Thriving in School Prof. Christine Peterson - 2023 MSF Virtual Conference
Opening Remarks - 2023 MSF Virtual Conferece
มุมมอง 689 หลายเดือนก่อน
Opening Remarks - 2023 MSF Virtual Conferece
Myhre Doctors Virtual Panel - 2023 MSF Virtual Confernece
มุมมอง 2299 หลายเดือนก่อน
Myhre Doctors Virtual Panel - 2023 MSF Virtual Confernece
Hearing Loss Dr Angela Lin - 2023 MSF Virtual Conference
มุมมอง 659 หลายเดือนก่อน
Hearing Loss Dr Angela Lin - 2023 MSF Virtual Conference
May We Talk About Autopsy Dr. Angela Lin - 2023 MSF Virtual Conference
มุมมอง 359 หลายเดือนก่อน
May We Talk About Autopsy Dr. Angela Lin - 2023 MSF Virtual Conference
Myhre Community Insight Lauren Neille - 2023 MSF Virtual Conference
มุมมอง 689 หลายเดือนก่อน
Myhre Community Insight Lauren Neille - 2023 MSF Virtual Conference
Myhre Insight Melissa Syperek - 2023 MSF Virtual Conference
มุมมอง 389 หลายเดือนก่อน
Myhre Insight Melissa Syperek - 2023 MSF Virtual Conference
From Bench to Approval The Drug Development Process Dr Mark Lindsay - 2023 MSF Virtual Conference
มุมมอง 449 หลายเดือนก่อน
From Bench to Approval The Drug Development Process Dr Mark Lindsay - 2023 MSF Virtual Conference
Global Community Updates - 2023 MSF Virtual Conference
มุมมอง 439 หลายเดือนก่อน
Global Community Updates - 2023 MSF Virtual Conference
Genetics Dr Lisa Schimmenti - 2023 MSF Virtual Conference
มุมมอง 849 หลายเดือนก่อน
Genetics Dr Lisa Schimmenti - 2023 MSF Virtual Conference
NIH Immunology Research Update Dr Stella Hartono - 2023 MSF Virtual Conference
มุมมอง 769 หลายเดือนก่อน
NIH Immunology Research Update Dr Stella Hartono - 2023 MSF Virtual Conference
Myhre Zebrafish Research Update Dr Bert Calleweart - 2023 MSF Virtual Conference
มุมมอง 3849 หลายเดือนก่อน
Myhre Zebrafish Research Update Dr Bert Calleweart - 2023 MSF Virtual Conference
Fostering Independence for Neurodiverse Populations Elise Wulff - 2023 MSF Virtual Conference
มุมมอง 729 หลายเดือนก่อน
Fostering Independence for Neurodiverse Populations Elise Wulff - 2023 MSF Virtual Conference
Myhre Guidelines for Myhre Syndrome Dr Angela Lin - 2023 MSF Virtual Conference
มุมมอง 589 หลายเดือนก่อน
Myhre Guidelines for Myhre Syndrome Dr Angela Lin - 2023 MSF Virtual Conference
Closing Remarks - 2023 MSF Virtual Conference
มุมมอง 229 หลายเดือนก่อน
Closing Remarks - 2023 MSF Virtual Conference
Great Job Kate, lovely video!
Fantastic news 😁
we discovered three days ago that my son andrea is affected by this syndrome, i am very worried, i would like to know more we are italians we live in rome
we discovered a few days ago that my son andrea is affected by this syndrome, we are italian we live in rome, i would like to know more
we have discovered that my son is affected by this syndrome, I would like to know more, we are Italians from Rome
my son is affected by this syndrome, we don't know anything about it we are Italian "roma"
Thank you for this lecture❤️ my sister has myhre syndrome and in our country they don't even know such a diagnosis, so there are no good specialists who could help her adapt to society or explain to our parents how to work with such children What you are doing means a lot to me✨
p̶r̶o̶m̶o̶s̶m̶
Thank you
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