We have been asked to say a little more about the forthcoming camp in Languedoc. News comes out slowly, but we shall add to it here. For our first educational video, please watch the stories of nine of our young people:
Author Archives: cricpadmin
The second question is
Did you read about South Africa, Switzerland, the Netherlands or India today? You can find more information about all the ILF national frameworks and learn more about the ILF here
So today’s question is:
What is the main cause of lymphœdema worldwide?
Answers please in the comments box below. If you wish to remain anonymous please say so otherwise we shall publish, subject to editorial discretion, what you have to say.
The first question is
What do we do and why?
All the national lymphœdema frameworks work hard in researching, accessing, educating, and above all hearing and treating patients – the patients are why we do what we do.
The next two questions are for you today:
What is the biggest challenge for you with lymphœdema?
What is your greatest wish long-term for living with lymphœdema?
Answers please in the comments box below. If you wish to remain anonymous please say so otherwise we shall publish, subject to editorial discretion, what you have to say.
Camp 2024
We are excited to announce the International Camp to be held at a venue in France, 3rd-7th July 2024.
Further details to follow… watch this space!
The video above is from a previous camp held in Italy in 2017
Genetics and Primary Lymphœdema: Q&A
Published by VASCERN on their YouTube channel:
VASCERN, the European Reference Network on Rare Multisystemic Vascular Diseases, currently gathers 31 highly specialized multidisciplinary expert teams from 26 Healthcare providers (HCPs) and 7 affiliated partners HCPs coming from 16 EU Member States, and various European Patient Organisations. VASCERN is coordinated by Prof. Guillaume Jondeau, Cardiologist and Coordinator of the Centre of Reference for Marfan Syndrome and related disorders, AP-HP Hôpital Bichat, Paris, France.
Montpellier June 2023
Montpellier May 2023
Lymphœdema – a teenager’s perspective
Published by VASCERN on their YouTube channel:
VASCERN, the European Reference Network on Rare Multisystemic Vascular Diseases, currently gathers 31 highly specialized multidisciplinary expert teams from 26 Healthcare providers (HCPs) and 7 affiliated partners HCPs coming from 16 EU Member States, and various European Patient Organisations. VASCERN is coordinated by Prof. Guillaume Jondeau, Cardiologist and Coordinator of the Centre of Reference for Marfan Syndrome and related disorders, AP-HP Hôpital Bichat, Paris, France.
Genetic Testing for primary lymphœdema – a mother’s perspective
Published by VASCERN on their YouTube channel:
VASCERN, the European Reference Network on Rare Multisystemic Vascular Diseases, currently gathers 31 highly specialized multidisciplinary expert teams from 26 Healthcare providers (HCPs) and 7 affiliated partners HCPs coming from 16 EU Member States, and various European Patient Organisations. VASCERN is coordinated by Prof. Guillaume Jondeau, Cardiologist and Coordinator of the Centre of Reference for Marfan Syndrome and related disorders, AP-HP Hôpital Bichat, Paris, France.
What do you need to know?
Published by Lymphie Strong on its YouTube channel:
Lymphie Strong – A Lymphœdema Support Community – is an online resource for people with lymphœdema by people with lymphœdema who know from first hand experience how challenging living with chronic swelling can be and how it impacts your life in both big and small ways.
lymphiestrong.com