Comunidad

CdLS Foundation UK and Ireland



In the UK & Ireland the Foundation is run entirely by volunteers - including parents and professionals, plus a part-time Office Administrator. Trustees are elected, or re-elected at the AGM. In addition, we have regional points of contact the Regional Volunteers.

Registered Charity No. 1054033.

mission

The CdLS Foundation UK & Ireland is a family support organisation which exists to ensure early and accurate diagnosis of CdLS throughout the world, promoting research, and enabling individuals, families, friends and professionals make informed decisions and plan for the affected person’s present and future.

Calendario de nuestros eventos   

What we do...

The UK & Ireland Foundation also has its own Scientific Clinical Advisory Team (SCAT). This team is comprised of top professionals from the UK with an extensive knowledge of CdLS.The CdLS UK and Ireland group also holds mini conferences/family meetings twice a year where families get to meet each other and get the chance to talk informally about the condition and learn from the experiences of others. For carers and professionals, there are presentations that focus on specific elements of the condition. It is also a chance for families to meet with professionals that know CdLS. These events move around the regions so everybody gets a chance to go.The Foundation has a helpline which is manned by our general manager. We also produce booklets and other information packs about the condition which are sent to carers and professionals to spread awareness and provide basic information about CdLS.There is also our magazine "Reaching Out UK & Ireland", published 2-3 times a year, which covers news stories about research developments, news from our families and articles on issues affecting people with CdLS.There is no charge for people with a CdLS family member but donations of £15 a year are welcomed as a fair contribution towards the running costs of the group.
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Información de contacto

PO Box 8368
Ripley
Derbyshire
DE5 4DA

Phone: 01375 376439

Lea más sobre nuestra comunidad...

Nuestros voluntarios y colaboradores ...

Office Administrator

Natalie Blockley

Chairman

David Axtell

Conéctese

Sigue estos pasos ...

De lo contrario, póngase en contacto con su centro nacional de expertos


Nuestras comunidades

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Dansk

Cornelia de Lange foreningen

dinamarcanoruegasueciafinlandia
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English

CdLS Foundation UK and Ireland

reino unidoirlanda
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Español

Asociación Española Síndrome de Cornelia de Lange (AESCdL)

españa
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English

Canadian CdLS Foundation

canada
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עברית

(CdLS) האגודה הישראלית תסמונת קורנליה דה לנגה

israel
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Deutsch

Arbeitskreis Cornelia de Lange Syndrom e.V.

alemaniaaustriasuiza
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Español

Comunidad Argentina del Sindrome Cornelia de Lange

argentina
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Português

Associação Brasileira Síndrome Cornélia de Lange

brasil
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Italiano

Ass. Naz. di Volontariato Cornelia De Lange ONLUS

italia
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Português

Rarissimas - Associação Nacional de Deficiências Mentais e Raras

portugal
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Nederlands

Vereniging Cornelia de Lange syndroom

países bajosbélgica
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Français

ASSOCIATION FRANÇAISE DU SYNDROME DE CORNELIA DE LANGE

franciasuizabélgicaalgeria
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Polski

Stowarzyszenie Dzieci i Rodzin Cornelia de Lange Syndrom (CdLS) w Polsce

polonia
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English

the Cornelia de Lange Syndrome (CdLS) Foundation USA

estados unidos
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English

The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA)

australianueva zelandamalasiafilipinassingapur
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Español

Fundación CdLS COLOMBIA

colombia

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Toda la información contenida en este sitio web tiene únicamente fines educativos. El lugar para obtener consejos médicos específicos, diagnósticos y tratamientos es su médico. El uso de este sitio es estrictamente bajo su propio riesgo. Si encuentra algo que cree que necesita ser corregido o aclarado, por favor háganoslo saber en: 

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