The first question is

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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

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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

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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.

Good morning!

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Welcome to Lymph4kids and Lymph4parents!

We are here to have fun, to learn, to encourage each other, but not to lead you up the garden path unless it is to have fun? We are here to serve each other, let us do so as each one struggles in a different way with the complexities of this condition which we call lymphœdema.

The administrators hope you enjoy – enjoy a visit to a website you say? would we not prefer to sit in a comfortable place and converse with others of like and dissimilar minds over coffee and cake, or chocolate and truffles, ice-cream or gelato, or simply with a glass and those rock hard scones that your grandmother makes?

Well, whether you enjoy it or not, please contribute, please comment, please add material.

Comments are moderated before being published, so please also be patient!

Videos:

There is a standard upload limit of 2mb on this site, so it is difficult (not impossible) to upload large videos. The video of the Italian camp is nearly 200mb. I have uploaded it to this site using a back door. This should only ever be done by administrators not general editors or contributors. The very short videos on the Montpellier posts (here and here) are under the limit, but little more than animated graphics, There are (at least) three other ways to display videos here:

  • Link to an external site – any site where the video is located and we have permission to use it
  • YouTube
  • Vimeo

On both Vimeo and YouTube a channel is required (ILF have one on YouTube already), Videos may be marked Private (ie for here) or Public (you can find them by searchingYoutube). Examples of the same video are below.


Video held on a random external site – no guarantee that it will remain at the same location.


Embedded YouTube video. The splash screen has been set differently here than in the other two.

Embedded Vimeo video

Lymphœdema – a teenager’s perspective

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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

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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.