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Dr Dan Jagger welcomes delegates to the Cilia Awareness Day

Ciliopathy Alliance Ciliopathy Alliance

Delegates at the Cilia Awareness Day at the Institute of Child Health, London

Ciliopathy Alliance Ciliopathy Alliance

Fiona Copeland on the impact of Primary Ciliary Dyskinesia

Ciliopathy Alliance Ciliopathy Alliance

Tess Harris on the impact of Polycystic Kidney Disease

Ciliopathy Alliance Ciliopathy Alliance

Kerry Leeson-Beevers on the impact of Alström Syndrome

Ciliopathy Alliance Ciliopathy Alliance

Rare Disease UK on the rare disease strategy for the EU

Ciliopathy Alliance Ciliopathy Alliance

Delegates visit the Exhibition Stands

Ciliopathy Alliance Ciliopathy Alliance

Dr Dan Jagger introduces Kay Parkinson of Alström Syndrome UK

Ciliopathy Alliance Ciliopathy Alliance

Dr Claire Hogg on the AGNSS diagnostic service for Primary Ciliary Dyskinesia

Ciliopathy Alliance Ciliopathy Alliance

The Genetic Alliance

Ciliopathy Alliance Ciliopathy Alliance

Delegates visiting the Exhibition Stands

Ciliopathy Alliance Ciliopathy Alliance

Kay Parkinson interviewed about Alström Syndrome

Ciliopathy Alliance Ciliopathy Alliance

Delegates visiting the Exhibition Stands

Ciliopathy Alliance Ciliopathy Alliance

Welcome to the Ciliopathy Alliance

The Ciliopathy Alliance brings together patient support groups, researchers, doctors and allied health professionals representing patients and families living with and affected by ciliopathies - diseases caused by defects in the function or structure of cilia.

Dysfunctional cilia are known to underlie a number of often chronically disabling and sometimes life-threatening genetic conditions. They affect multiple systems, causing blindness, deafness, chronic respiratory infections, kidney disease, heart disease, infertility, obesity and diabetes.

Over 20 ciliopathies have been identified and more are suspected, with an estimated 1 in 1,000 people affected.

Our shared vision is to improve the quality of life for people living with ciliopathy syndromes and conditions. Please join us in this endeavour.

Find out more about the structure and function of cilia...

Find out more about ciliopathies...

Find out more about ciliopathy Patient Groups...

Privacy Policy

Privacy and Data Protection Policy

The Ciliopathy Alliance ("CA")
Registered in England and Wales, Company Ltd by Guarantee

The CA respects the privacy of everyone who visits this site. The purpose of this policy is to describe the types of information that we collect from you when you visit our site and explain how we use this information.

Any information that you choose to provide us with about yourself will be held on a secure computer in strict accordance with the Principles of the Data Protection Act (DPA) 1998 (UK) and relevant European Union Data Protection Directives.

The CA may change this policy at any time in line with legislative changes or changes to the policy of the organisation. Please check our website from time to time to ensure you are aware of any changes.

Your personal information
We collect your personal information when you complete an enquiry form or send an email. This information will include your name and email address plus other relevant information you choose to provide. The more information you can give us about yourself, the better we can provide you with the services that you need and want. We publish information leaflets and a newsletter for our members, health professionals and those that view the CA website and these may contain from time to time images and personal information of our member families. We never publish any image of or anything without clear consent from those concerned. We also hold personal information about our staff, trustees and volunteers.

However, we only collect this information from you if you choose to provide it to us and we do not hold your information for longer than is necessary.

We use this information:

  1. To help us respond to enquiries
  2. To help us make the website more relevant to visitors’ needs
  3. To conduct research (anonymous)
  4. To email visitors from time to time with information or services which we think may be of interest

We will not disclose any personally identifiable information without your permission unless we are legally entitled or required to do so (for example, if required to do so by legal process or for the purposes of prevention of fraud or other crime). You will be treated as having given your permission for disclosures referred to in this policy.

Who has access to your information?
Only designated, authorised people have access to your personal information, for instance staff or trustees. If you have allowed us to use your personal information for the purposes above, we may have to disclose this information to any company or organisation to which we pass the responsibility to handle email or other direct marketing communications. Should this happen, we ensure that any third party companies who handle your information are registered with and comply with the Data Protection Act.

Can you access the information we hold about you?
You can at any time remove your consent to our use of your personal data. You can also contact us at any time to review or change the information you have supplied to us. You need to write to us at the address below or email us at This email address is being protected from spambots. You need JavaScript enabled to view it. and pay any required fee (up to GBP10) to us to cover our costs. We will then provide you with the following information:

  • Your personal data which is stored with us
  • The purposes for which your data is being processed
  • Who has access to your data

Due to the global structure of the internet, there is a possibility that information provided by you may be transmitted or processed internationally. As specified by the DPA, we undertake to stop the transfer of personal data to any country or territory outside the European Economic Area (EEA) unless the third country in question ensures an adequate level of protection for the rights and freedoms of data subjects.

Non-personal information collected during your visit to our site
Whenever you browse our website, read pages, or download information, the web server automatically records certain information about your visit from the computer or device you use to access our site.

This information does not identify you personally. It just tells us how many visitors come to our site and the types of computers they use. With this information, we can improve our site for all our visitors and make it more useful to you.

The information includes the following:

  • The date and time you access our site.
  • How many and which pages you visit during a 'session' on our site and how long you were on the site.
  • Your internet domain name (this might be your internet service provider such as BT, Yahoo or your school, place of work etc) and the ‘IP’ address (this is a number assigned to your computer whenever you are surfing the web) which allows you to access our website.
  • The internet browser you use (eg Microsoft Explorer, Firefox, Chrome or Safari) and your computer’s operating system (eg Windows Vista or Mac).
  • The site you were on before you linked to ours (eg Google if you found us from a search engine).

Use of cookies
A cookie is just a line of text and numbers that is created by our website and stored on your computer or other device.when you visit our site. The cookie does not collect or contain personal information about you and poses no security or virus risk to your computer. When you return to our site, the cookie associates your computer with the information that you gave us when you first visited or registered.

As a result of new European Union legislation, we need your consent to use cookies when you visit our website. Please our New Cookie Policy for more details.

Your emails

We personally read all emails sent to us and we undertake to respond with 48 hours of receipt.
Your email address is kept securely and is only used to answer your request.

We have implemented technology and policies with the objective of protecting your privacy from unauthorised access and improper use and will update these measures as new technology becomes available.

Third party websites
We cannot be responsible for the privacy policies and practices of other websites, even if you access them using links from our web site, and recommend that you check the policy of each site you visit. In addition, if you linked to our web site from a third party web site, we cannot be responsible for the privacy policies and practices of the owners or operators of that third party web site and recommend that you check the policy of that third party web site and contact its owner or operator if you have any concerns or questions.

Message board and forums
Where we operate a message board or forum, you will be invited to submit a new message or to reply to an existing message. Such messages, contacts and any other information you provide to us are together referred to in these terms and conditions as "Information". By submitting Information you are granting permission for us to use, edit, modify, copy, distribute, transmit, publicly display, publicly perform, reproduce, publish or transfer any such Information and to allow others to do the same.

We reserve the right to:
* remove or to edit any Information or materials or block your access at our sole discretion and without notice; and/or
* disclose any information as required by law; and/or
* take such other action as may be reasonably necessary to prevent any breach of these terms and conditions or any breach of applicable law or regulation.

More questions about privacy?
Please contact us if you have any questions or concerns about how we protect your personal information and ensure your privacy.
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Write to: The Ciliopathy Alliance, 91 Royal College St, London NW1 0SE
Phone: +44 (0) 20 7387 0543

Website Disclaimer

The Ciliopathy Alliance (“CA”) Website Disclaimer
We want you to enjoy your visit to the CA website and we try to ensure that information on our site is accurate, complete and up-to-date.

All information contained on this site is intended for general educational, informational and helpful purposes only. It is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment.

We do not knowingly reproduce inaccurate or libellous material. Individuals and organisations referred to by us do not necessarily endorse this reference. Always seek the advice of your consultant, GP, or other qualified health professional before starting any new treatment. Medical information changes rapidly. We make efforts to update the content on the site but some information may be out of date.

Without prejudice to your statutory rights the site and all information, text, names, images, pictures, logos, links and icons and other materials (without limitation) are provided ‘AS IS’ and on an 'IS AVAILABLE' basis without representation warranty or endorsement, express or implied. In particular, the information provided on this site does not constitute business, medical or other professional advice, and is subject to change. Nor do we guarantee that use of this site will be uninterrupted or error-free, or that the site and its servers are free of computer viruses or bugs.

In no event will CA be liable to any person for any injury, damage or loss that may arise from the use of any information contained in our site or products advertised on our site, including, without limitation, indirect or consequential damages, or any damages whatsoever arising from use or loss of use, data, or profits, whether in action of contract, negligence or other tort, arising out of or in connection with the use of the site.

HON Code of Conduct (HONcode) for medical and health websites
We try wherever possible to comply with HONcode Principles in particular with regard to:

  1. Presentation of medical information
  2. Purpose of the website
  3. Privacy and confidentiality
  4. Referenced and dated information
  5. Disclosure of the governance of the CA and sources of funding

All rights, including copyright and database right, in the CA website and its contents, are owned by or licensed to CA, or otherwise used by CA as permitted by applicable law or the copyright holder. You may not copy, reproduce, republish, download, post, broadcast or transmit any text, images, graphic, logo, button, icon, image and their selection and arrangement thereof, and any underlying source code and software, for any commercial or public purpose without prior written permission from CA or the copyright holder or in accordance with current Copyright, Designs and Patents Acts. You may not adapt, alter or create any of the material or information in this site or use it for any other purpose other than for your personal non-commercial use. You agree to use this site only for lawful purposes.

CA reserves the right to use for its own purposes any material submitted to the site, including text and images, either on the site or in any other form, including for publicity purposes. CA reserves the right to monitor submissions to the site and to edit or reject any submissions.

All names, images, logos identifying CA are proprietary marks. All third party brand, product, service and company names contained on this site are the trademarks, service marks and trade names of their respective holders. CA does not give permission for their use by any person other than the holders. Any such use may constitute an infringement of the holders’ rights.

External links
CA has endeavoured to assess the quality of external sites but does not represent, warrant, endorse or hold responsibility over any external sites that may be linked to and from this site. Any external site that you visit by clicking through a link on this site is outside the control of CA and you visit entirely at your own risk.

These Terms of Use shall be governed by and construed in accordance with the laws of England and Wales. Disputes arising here from shall be exclusively subject to the jurisdiction of the courts of England and Wales.

If any of these Terms should be determined to be illegal, invalid or otherwise unenforceable by reason of the laws of any state or country in which these Terms are intended to be effective, it shall be severed and deleted from this clause. All other Terms of Use and Terms and Conditions shall remain in full force and continue to be binding and enforceable.

CA reserves the right to change these any of its terms and conditions at any time by posting changes online.

How to contact us
We welcome your feedback. Please leave your comments on the page provided or you can contact us by emailing specific contacts in the Ciliopathy Alliance.

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Write to: The Ciliopathy Alliance, 91 Royal College St, London NW1 0SE
Phone: +44 (0) 20 7387 0543

Make a Donation


The Ciliopathy Alliance receives no government support.

At present, we seek donations to help us establish the Alliance and create a foundation for future research and patient support.

To make a donation:

  • Send a cheque to 'Ciliopathy Alliance' at 91 Royal College St, London NW1 0SE
  • Use the PalPal button below