GLOBAL REPRESENTATION
EUROPEAN CHROMOSOME 11 NETWORK
Our network is a support group for patients with anomalies on the chromosome 11, their families, and relatives. We have about 100 member families from all over Europe.
Our offers:
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Assistance and support to families and patients
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We give them the possibility to find contacts
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In addition to that every member gets a regular newsletter and information from our website
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Every other year we organize a European Conference for families and researchers. This event is our major platform to exchange information and experiences. The results of the conference are published
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We support research on chromosome 11
Please join if you have, or have a family member with, Jacobsen Syndrome (11q deletion) or any other 11q chromosome disorder, and live in the UK or Ireland. We can chat about medical, educational and other issues experienced by us unique to our location. We also have members from all over the world sharing stories and views - everyone is welcome!!
11Q ESPAÑA
PARA QUÉ 11Q ESPAÑA
Apoyar
a los padres, familias y afectados del Síndrome de Jacobsen.
Asegurar
el acceso a una información fiable y actualizada sobre este síndrome en lengua española.
Crear
una red de contactos de los afectados cuya lengua principal es el español.
Facilitar
el dialogo con las asociaciones internacionales.
Fomentar
la investigación y concienciando a la sociedad acerca los problemas y necesidades de esta enfermedad genética rara.