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Marfan Trust
เข้าร่วมเมื่อ 18 ก.ค. 2014
The Marfan Trust www.marfantrust.org/ is the only UK charity that funds medical research so that more is known about Marfan syndrome and its management. Find out more visit our website
Over 18,000 people are affected by Marfan syndrome in the UK, with many more anticipated to be living with the condition undiagnosed.
Our important work hopes to improve the treatments of patients and increase awareness of this condition. Our you tube channel will have videos of interest about Marfan syndrome.
Over 18,000 people are affected by Marfan syndrome in the UK, with many more anticipated to be living with the condition undiagnosed.
Our important work hopes to improve the treatments of patients and increase awareness of this condition. Our you tube channel will have videos of interest about Marfan syndrome.
Self-Advocating with Marfan Syndrome - Gareth Owens, Chair of Aortic Dissection Awareness UK
Self-Advocacy with Marfan Syndrome
In this, the concluding talk to Information Day, Gareth Owens gives a rousing talk on how to advocate for yourself - an essential tool for anyone with Marfan syndrome - Illustrated through three medical Marfan-induced 'emergencies' in his life.
In this, the concluding talk to Information Day, Gareth Owens gives a rousing talk on how to advocate for yourself - an essential tool for anyone with Marfan syndrome - Illustrated through three medical Marfan-induced 'emergencies' in his life.
มุมมอง: 38
วีดีโอ
Picture Perfect: Predicting Outcomes by Estimating Aortic Wall Volume
มุมมอง 78หลายเดือนก่อน
Picture Perfect: Predicting Outcomes by Estimating Aortic Wall Volume Fifth year medical student Mehar Birjal has a background in research heavily focused on the aortic root. Since he was especially interested in advancing the field of imaging and clinical diagnosis in the context of MFS and LDS, he was delighted to be accepted into the RBH Cardiac Radiology Department, supervised by Dr Saeed M...
Research in the Marfan Trust Sonalee Laboratory
มุมมอง 38หลายเดือนก่อน
Research in the Marfan Trust Sonalee Laboratory Dr José Aragon-Martin gives an insight into his research in the Sonalee Laboratory. Dividing its time between two prestigious establishments, the William Harvey Research Institute and the Institute of Ophthalmology, the laboratory is host to exciting new discoveries.
Reproductive Options and Pregnancy with Marfan Syndrome: Dr Yaso Emmanuel
มุมมอง 26หลายเดือนก่อน
Reproductive Options and Pregnancy with Marfan Syndrome Dr Yaso Emmanuel is a Consultant Cardiologist at Guy's and St Thomas' NHS Foundation Trust. Dr Emmanuel's niche is pregnancy and in this presentation she gives a comprehensive overview of reproductive options with Marfan syndrome.
Marfan Syndrome and Paediatric Aortopathy
มุมมอง 84หลายเดือนก่อน
Aortopathy in Childhood Dr Nitha Naqvi is a Consultant Paediatric Cardiologist at the Royal Brompton Hospital and an internationally acclaimed expert in heart disease in children. In this video from 12 October 2024, Dr Naqvi talks of the aortic implications of Marfan syndrome for affected children and how to manage these. She further discusses the latest thinking on the approach to medication.
An Introduction to Loeys-Dietz Syndrome
มุมมอง 254หลายเดือนก่อน
Loeys-Dietz Syndrome Consultant Paediatric Cardiologist at the Medical University of Vienna, Dr Christiane Pees speaks on the distinction between Marfan and Loeys-Dietz syndromes and how the latter condition was first identified. She further gives an overview of Loeys-Dietz.
A Patients' Guide to the Galaxy of Pain
มุมมอง 179หลายเดือนก่อน
A Guide to the Galaxy of Pain A consultant in Rheumatology and Chronic Pain at the Royal National Orthopaedic Hospital, Dr Helen Cohen takes you on a journey through the different types of pain, their various causes and management. Dr Cohen further advises on how to describe the particular pain you feel, and the best way in which to approach your doctor when seeking relief.
101 Genomes Marfan Project
มุมมอง 44หลายเดือนก่อน
101 Genomes Marfan Project Romain Alderweireldt presents 101 Genomes, a project researching protective modifier genes that counter the cardiovascular implications of Marfan syndrome. This project was inspired by Romain's son and the maverick spirit of PEARS pioneer, Tal Golesworthy.
The Eye in Marfan Syndrome
มุมมอง 76หลายเดือนก่อน
The Eye in Marfan Syndrome A Consultant Ophthalmologist at Mid and South Essex NHS Trust, Mr Aman Chandra has a specialist interest in Retinal diseases and Vitreoretinal Surgery. He is further interested in connective tissue conditions affecting the eye, particularly Marfan Syndrome. On Saturday he gave a fantastically comprehensive talk on the eye and Marfan
The Eye in Marfan Syndrome
มุมมอง 15หลายเดือนก่อน
Marfan and the Eye Medical Student Navaneethan Adityaraj spent months researching the eye in Marfan syndrome. Overseen by Consultant Ophthalmic Surgeon and Marfan Trust Advisor Mr Aman Chandra, Navaneethan has produced a fantastically comprehensive guide.
Dr Nitha Naqvi and Nayyar Naqvi OBE, discuss Marfan Syndrome
มุมมอง 1173 หลายเดือนก่อน
Dr Nitha Naqvi - Paediatric Cardiologist at Royal Brompton & Harefield NHS Foundation, and Nayyar Naqvi OBE - Emeritus Consultant Cardiologist, Wrightington Wigan & Leigh Teaching Hospitals NHS Trust, discuss Marfan syndrome.
Care and support for Marfan syndrome patients
มุมมอง 533 หลายเดือนก่อน
Joanne Jessup, the Marfan Trust’s clinical nurse specialist talks to clinical nurse specialists Fortunate Mamombe and Rachana Ramakrishnan of the Royal Brompton Hospital, about care and support for Marfan syndrome patients.
Thank You CannonBawz
มุมมอง 763 หลายเดือนก่อน
Founded in 2015 by Kris O’Neill, The CannonBawz Run is a car rally which has taken hundreds of Cars and entrants on exciting journeys all across Scotland, and in the process raising money for Marfan Trust, The Marie Crawford Boyd Foundation & Children’s Liver Disease Foundation.
Heads, Hearts & Minds: The Psychosocial Effects of Living with Marfan, Before & After Heart Surgery
มุมมอง 1296 หลายเดือนก่อน
After much extensive research and many patient interviews, award-winning nurse Rosalie Magboo presents the results of her PhD study on the Psychosocial Effects of a Diagnosis of Aorto-Vascular Manifestations in Marfan Syndrome. The Marfan Trust is proudly collaborating with the Aortic Dissection Awareness UK & Ireland in hosting this webinar and disseminating the results.
Pectus Problems Webinar
มุมมอง 2036 หลายเดือนก่อน
Pectus problems can often be the first clue to the existence of Marfan syndrome. For this webinar, Victoria Hilton from the Marfan Trust introduces the new charity Pectus Matters; chaired by Consultant Cardiothoracic Surgeon Simon Kendall and run by patient advocates including Ellie Musgrave and Lisa de-Laune.
Connective Tissue Disorder Gene Mutation Research in the Sonalee Laboratory.
มุมมอง 909 หลายเดือนก่อน
Connective Tissue Disorder Gene Mutation Research in the Sonalee Laboratory.
Medical Management of Marfan Syndrome
มุมมอง 2309 หลายเดือนก่อน
Medical Management of Marfan Syndrome
The Psychosocial Aspects of Marfan Syndrome on Families
มุมมอง 605ปีที่แล้ว
The Psychosocial Aspects of Marfan Syndrome on Families
Marfan Awareness - Why is Awareness of the Condition Important?
มุมมอง 152ปีที่แล้ว
Marfan Awareness - Why is Awareness of the Condition Important?
Marfan Awareness - Marfan Syndrome Diagnosis
มุมมอง 288ปีที่แล้ว
Marfan Awareness - Marfan Syndrome Diagnosis
Marfan Awareness - Why Marfan Awareness is Important
มุมมอง 293ปีที่แล้ว
Marfan Awareness - Why Marfan Awareness is Important
Professor John Pepper - What's New in Aortic Surgery
มุมมอง 2342 ปีที่แล้ว
Professor John Pepper - What's New in Aortic Surgery
Professor John Pepper - What's New in Mitral Valve Surgery
มุมมอง 922 ปีที่แล้ว
Professor John Pepper - What's New in Mitral Valve Surgery
Professor Graham Stuart - AIMS Trial Irbesartan in Marfan Syndrome
มุมมอง 1732 ปีที่แล้ว
Professor Graham Stuart - AIMS Trial Irbesartan in Marfan Syndrome
Dieter Benninghoven - Pyschosocial Aspects
มุมมอง 482 ปีที่แล้ว
Dieter Benninghoven - Pyschosocial Aspects
I always wonder having Marfan syndrome are we born with chronic pain if so we don’t know any different do we?
Well done guys how you explained it in simplistic terms. X
My cousin died while under the care of this person October 18 2024. In my opinion, he is far from being the expert that he advertises himself to be.
Thankyou it's our please
Fantastic to see, and well done to Kris and the rest of the Cannonbawz family for another great fundraising effort. 🎉
Management is a joke when we speak about Marfan Syndrome.
As many have sight problems the pointer on screen could do to be larger and brighter coloured.
my dr took my blood for this on 25 jan and i recently got a message telling me to contact him to look at it but i can't contact my doctor because they look at emails and ignore them to tell me to use an app that doesn't work or call a number despite being mute. i think i might kill myself
don't say that 😕 sorry you have to deal with that. most people deal with many hard situations. it's inevitable in life. maybe there's a different clinic specialized for you to go to
"Promo SM" 😌
I can't listen to this Your voice is going in and out
I owe this man plus other surgeons my life royal Brompton greatest hospital in the world thanks prof x
getting it soon. scary stuff. hearing ppl who are experienced talking about it with confidence makes me confident. thanks for this video.
Excellent Thank you
My son has neonatal Marfan syndrome - I have a TH-cam channel that has a heavy focus on his care as he just went through the David’s procedure at 10 months old back in June 🤍🤍 love that you out this info out for others
𝔭𝔯𝔬𝔪𝔬𝔰𝔪
This is my hands … and my daughters! Yeah … we have Marfans.
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Great post. Well explained! ❤️
Oh Lucy, you have my fingers!!!!
Thank you, for all you do. :)
thank you for interviewing!
Sir I want to talk with you about Marfan syndrome
Hi..am from India. Am Marfan's patient, I have many questions... May i get anyone who help me... please contact me on kunalsjadhav12@gmail.com
Am marfan's patient... I would like to give my case for research to any lab. But how i dont know... So please give me idea.
Hi Kunal, sorry for the delay, please email your enquiry to marfantrust@sgul.ac.uk or jgomes@sgul.ac.uk and I shall pass it on to my boss, Dr Anne Child. thanks. Janet
This video is phenomenal. So very descriptive and informing. It's a definite must watch
Just Giving Campaign page link campaign.justgiving.com/charity/marfantrust/fundthelabforfeb
Thank you for your support we are truly grateful :)