Category Archives: About

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.

Infections and Lymphœdema

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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.

Born differently – the teen with the swollen body

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Published by Truly on its YouTube channel, which reports:

18-YEAR-OLD BR was born with a rare form of lymphœdema called Hennekam syndrome. Unlike most people with lymphœdema who experience swelling due to excess fluid in one or two limbs, Bella has swelling throughout her entire body. Undeterred by life’s obstacles, Bella is a positive and outgoing person, who has a fantastic network of friends and family that support her. Bella one day hopes to be the first disabled female to win a BAFTA for Directing.

Lymphatic Malformations – part 1

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Published by Children’s Hospital Colorado on their YouTube channel

Children’s Hospital Colorado: At Children’s Hospital Colorado, we see more, treat more and heal more kids than any other hospital in our seven-state region. Our mission is to improve the health of children through the provision of high-quality coordinated programs of patient care, education, research and advocacy.
childrenscolorado.org

Lymphatic Malformations – part 2

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Published by Children’s Hospital Colorado on their YouTube channel

Children’s Hospital Colorado: At Children’s Hospital Colorado, we see more, treat more and heal more kids than any other hospital in our seven-state region. Our mission is to improve the health of children through the provision of high-quality coordinated programs of patient care, education, research and advocacy.
childrenscolorado.org

Klippel-Trenaunay syndrome

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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.