Author Archives: cricpadmin

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.

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.