Comunidade

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.

Calendário dos nossos 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.

Informação de contacto

PO Box 8368
Ripley
Derbyshire
DE5 4DA

Phone: 01375 376439

Leia mais sobre a nossa comunidade...

Os nossos Voluntários e Apoiantes...

Office Administrator

Natalie Blockley

Chairman

David Axtell

Liga-te

Siga estes passos...

Caso contrário, contacte o seu centro nacional de especialização


As nossas comunidades

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Dansk

Cornelia de Lange foreningen

dinamarcanoruegasuéciafinlândia
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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)

espanha
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English

Canadian CdLS Foundation

canadá
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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.

alemanhaáustriasuíça
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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

itália
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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 baixosbélgica
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Français

ASSOCIATION FRANÇAISE DU SYNDROME DE CORNELIA DE LANGE

françasuíçabélgicaalgéria
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Polski

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

polónia
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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)

austrálianova zelândiamalaysiafilipinassingapura
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Español

Fundación CdLS COLOMBIA

colômbia

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Toda a informação contida neste WebSite é apenas para fins educativos. O local para obter aconselhamento médico específico, diagnósticos e tratamento é o seu médico. A utilização deste site é estritamente por sua conta e risco. Se encontrar algo que considere necessário corrigir ou esclarecer, por favor informe-nos em: 

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