ciliopathyalliance.org ciliopathyalliance.org

ciliopathyalliance.org

Welcome to the Ciliopathy Alliance!

The Ciliopathy Alliance aims to improve the lives of everyone affected by ciliopathies - life-threatening and sometimes devastating conditions caused by defective or dysfunctional cilia.

http://www.ciliopathyalliance.org/

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CONTACTS AT CILIOPATHYALLIANCE.ORG

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Tess HARRIS

91 Roy●●●●●●ege St

Lo●●on , London, NW1 0SE

GB

44.02●●●●●70543
te●●@tessharris.com

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Tess HARRIS

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44.02●●●●●70543
te●●@tessharris.com

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Welcome to the Ciliopathy Alliance! | ciliopathyalliance.org Reviews
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The Ciliopathy Alliance aims to improve the lives of everyone affected by ciliopathies - life-threatening and sometimes devastating conditions caused by defective or dysfunctional cilia.
<META>
KEYWORDS
1 cilium
2 cilia
3 primary cilium
4 motile cilia
5 PKD
6 Alstrom Syndrome
7 PCD
8 BBS
9 RP
10
CONTENT
Page content here
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press,site map,cookie policy,about us,membership,cilia,cilia journal,ciliopathies,alström syndrome,bardet biedl syndrome,jeune syndrome,joubert syndrome,nephronophthisis,polycystic kidney disease,primary ciliary dyskinesia,retinitis pigmentosa,links,news
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Welcome to the Ciliopathy Alliance! | ciliopathyalliance.org Reviews

https://ciliopathyalliance.org

The Ciliopathy Alliance aims to improve the lives of everyone affected by ciliopathies - life-threatening and sometimes devastating conditions caused by defective or dysfunctional cilia.

INTERNAL PAGES

ciliopathyalliance.org ciliopathyalliance.org
1

Site Map

http://www.ciliopathyalliance.org/sitemap.html

Purpose, Constitution and Funding. Structure and Function of Cilia. Impact of Defective Cilia. Link to PubMed Papers. Ciliopathy Alliance Launch and Cilia Awareness Day. Purpose, Constitution and Funding. Structure and Function of Cilia. Impact of Defective Cilia. Link to PubMed Papers. The Ciliopathy Alliance is supported by an Awards for All / Big Lottery Grant. Reg Charity No 1148034 Reg Company in England No 7842342. Reg Office: 91 Royal College St London NW1 0SE.

2

Press

http://www.ciliopathyalliance.org/press.html

Purpose, Constitution and Funding. Structure and Function of Cilia. Impact of Defective Cilia. Link to PubMed Papers. Tess Harris 44 20 7387 0543. Or via our email contact form. The Ciliopathy Alliance is supported by an Awards for All / Big Lottery Grant. Reg Charity No 1148034 Reg Company in England No 7842342. Reg Office: 91 Royal College St London NW1 0SE.

3

Jeune Syndrome

http://www.ciliopathyalliance.org/ciliopathies/jeune-syndrome.html

Purpose, Constitution and Funding. Structure and Function of Cilia. Impact of Defective Cilia. Link to PubMed Papers. Jeune Asphyxiating Thoracic Dysplasia (Jeune Syndrome, JATD). Variable degree or narrow/ small thorax due to short ribs resulting in lung hypoplasia in utero. Respiratory distress at birth and in infancy which improves later in life due to postnatal rib growth. Short arms and legs and shortening of the fingers (brachydactyly) may be present. Rarely extra fingers and toes (polydactyly).

4

Structure and Function of Cilia

http://www.ciliopathyalliance.org/cilia/structure-and-function-of-cilia.html

Purpose, Constitution and Funding. Structure and Function of Cilia. Impact of Defective Cilia. Link to PubMed Papers. Structure and Function of Cilia. Structure and Function of Cilia. Source: Andy Forge, UCL Ear Institute. Cilia are slender, microscopic, hair-like structures or organelles that extend from the surface of nearly all mammalian cells (multiple or single). They are primordial. The length of a single cilium is 1-10 micrometres and width is less than 1 micrometre. Cilia were long thought to be ...

5

Cilia

http://www.ciliopathyalliance.org/cilia.html

Purpose, Constitution and Funding. Structure and Function of Cilia. Impact of Defective Cilia. Link to PubMed Papers. Structure and Function of Cilia. Cilia were once considered as useless as wisdom teeth. Now they are known as extraordinary organelles (component of cells) that have evolved to perform a number of essential functions related to sensory and motility perception. Impact of Defective Cilia. This section contains a feed from PubMed with recent papers on 'ciliopathy', with hyperlinked titles.

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autozygosity.org autozygosity.org

autozygosity.org: Blog

http://autozygosity.org/blog

Sir Jules Thorn International Resource for Autozygosity Mapping. Public and Patient Involvement Event (13th July 2011). Report on Public and Patient Involvement Event published in CLIMB. Article on Sir Jules Thorn Research project in Genetic Alliance UK, spring 2011 newsletter. pg 8. Genetic Alliance UK news letter. A resource for young people, adults and families affected by recessive inherited genetic conditions. Please visit Ciliopathy Alliance. For more information on ciliopathies and support groups.

dyskinesia.be dyskinesia.be

Partenaires | Dyskinesia

http://www.dyskinesia.be/partenaires

Aller au contenu principal. Mise à disposition de matériel. La DCP dans le monde. Lions Club Tricentenaire de Charleroi. Ordre des Chevaliers d’Aulne. Laisser un commentaire Annuler la réponse. Votre adresse de messagerie ne sera pas publiée. Les champs obligatoires sont indiqués avec *. Adresse de contact *. Le portail de la dyskinésie ciliaire primitive. Encore un grand merci! Marché de printemps 2016. Dans La dyskinésie ciliaire primitive. Dans La dyskinésie ciliaire primitive.

pkdcharity.org.uk pkdcharity.org.uk

Past Info & Support Days

http://pkdcharity.org.uk/support/pkd-information-support-days/past-info-support-days

Fast facts about ADPKD. I want to know more. How did I get ADPKD. How is ADPKD diagnosed. How are cysts formed. Blood in the urine. Talking to children and young people about ADPKD. A Guide for Parents. Information and Support Days. ADPKD Info and Support Days. ARPKD Family Support Days. Past Info and Support Days. Online Groups and Social Media. PKD Telephone Befriending and Peer Support. Leave Us a Gift in Your Will. Fundraise via Our Partners. DIY Fundraising and Tips. Gift Aid on Donations. ARPKD Fam...

pkdcharity.org.uk pkdcharity.org.uk

Benefits

http://pkdcharity.org.uk/support/benefits

Fast facts about ADPKD. I want to know more. How did I get ADPKD. How is ADPKD diagnosed. How are cysts formed. Blood in the urine. Talking to children and young people about ADPKD. A Guide for Parents. Information and Support Days. ADPKD Info and Support Days. ARPKD Family Support Days. Past Info and Support Days. Online Groups and Social Media. PKD Telephone Befriending and Peer Support. Leave Us a Gift in Your Will. Fundraise via Our Partners. DIY Fundraising and Tips. Gift Aid on Donations. Onclick="...

pkdcharity.org.uk pkdcharity.org.uk

PKD Information & Support Days

http://pkdcharity.org.uk/support/pkd-information-support-days

Fast facts about ADPKD. I want to know more. How did I get ADPKD. How is ADPKD diagnosed. How are cysts formed. Blood in the urine. Talking to children and young people about ADPKD. A Guide for Parents. Information and Support Days. ADPKD Info and Support Days. ARPKD Family Support Days. Past Info and Support Days. Online Groups and Social Media. PKD Telephone Befriending and Peer Support. Leave Us a Gift in Your Will. Fundraise via Our Partners. DIY Fundraising and Tips. Gift Aid on Donations. PKD Telep...

pkdcharity.org.uk pkdcharity.org.uk

Online Groups & Social Media

http://pkdcharity.org.uk/support/pkd-social-media-online-communities

Fast facts about ADPKD. I want to know more. How did I get ADPKD. How is ADPKD diagnosed. How are cysts formed. Blood in the urine. Talking to children and young people about ADPKD. A Guide for Parents. Information and Support Days. ADPKD Info and Support Days. ARPKD Family Support Days. Past Info and Support Days. Online Groups and Social Media. PKD Telephone Befriending and Peer Support. Leave Us a Gift in Your Will. Fundraise via Our Partners. DIY Fundraising and Tips. Gift Aid on Donations. Renal Pat...

pkdcharity.org.uk pkdcharity.org.uk

Support

http://pkdcharity.org.uk/support

Fast facts about ADPKD. I want to know more. How did I get ADPKD. How is ADPKD diagnosed. How are cysts formed. Blood in the urine. Talking to children and young people about ADPKD. A Guide for Parents. Information and Support Days. ADPKD Info and Support Days. ARPKD Family Support Days. Past Info and Support Days. Online Groups and Social Media. PKD Telephone Befriending and Peer Support. Leave Us a Gift in Your Will. Fundraise via Our Partners. DIY Fundraising and Tips. Gift Aid on Donations. Turks and...

pkdcharity.org.uk pkdcharity.org.uk

Gift Aid on Donations

http://pkdcharity.org.uk/fundraising/gift-aid

Fast facts about ADPKD. I want to know more. How did I get ADPKD. How is ADPKD diagnosed. How are cysts formed. Blood in the urine. Talking to children and young people about ADPKD. A Guide for Parents. Information and Support Days. ADPKD Info and Support Days. ARPKD Family Support Days. Past Info and Support Days. Online Groups and Social Media. PKD Telephone Befriending and Peer Support. Leave Us a Gift in Your Will. Fundraise via Our Partners. DIY Fundraising and Tips. Gift Aid on Donations. If you pa...

pkdcharity.org.uk pkdcharity.org.uk

Support Groups

http://pkdcharity.org.uk/support/pkd-support-groups

Fast facts about ADPKD. I want to know more. How did I get ADPKD. How is ADPKD diagnosed. How are cysts formed. Blood in the urine. Talking to children and young people about ADPKD. A Guide for Parents. Information and Support Days. ADPKD Info and Support Days. ARPKD Family Support Days. Past Info and Support Days. Online Groups and Social Media. PKD Telephone Befriending and Peer Support. Leave Us a Gift in Your Will. Fundraise via Our Partners. DIY Fundraising and Tips. Gift Aid on Donations. Saint Vin...

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Welcome to the Ciliopathy Alliance!

Purpose, Constitution and Funding. Structure and Function of Cilia. Impact of Defective Cilia. Link to PubMed Papers. And Joomla Extensions by zootemplate.Com. Dr Dan Jagger welcomes delegates to the Cilia Awareness Day. Delegates at the Cilia Awareness Day at the Institute of Child Health, London. Fiona Copeland on the impact of Primary Ciliary Dyskinesia. Tess Harris on the impact of Polycystic Kidney Disease. Kerry Leeson-Beevers on the impact of Alström Syndrome. Delegates visit the Exhibition Stands.

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