en | fr | de | sp | it | du | ru | pr
HONcode status
 
Certificate of compliance with the Code of Conduct HONcode


HONcode status The health Website
Kleefstra syndrome
is in compliance with the HONcode


Title of the site:Kleefstra syndrome
Web address:http://www.kleefstrasyndrome.org/
HONcode PIN number :HONConduct754544
Date of initial review: 01 Jul 2009
Validity of certificate30 May 2012 - May 2014
Date of last visit25 Feb 2014
   Show the HONcode seal on this site

This certificate confirms the revision of the site by the HONcode Team at the above date.
It respects and pledges to honor the 8 principles of the HON Code of Conduct (HONcode).

* 1. Authoritative   2. Complementarity   3. Privacy   4. Attribution   5. Justifiability   6. Transparency
    7. Financial disclosure   8. Advertising policy



HONcode status
HONcode status

Follow us on
Follow me on Twitter  Find us on Facebook

 


Speed access of ethical health information online is critical.

Help us in our mission:


Do you think the site is not respecting the HONcode? Do not hesitate to report a claim on this site

The Health on the Net (HON) certificate serves as a guarantee that this website, at the date of its certification, complies with and pledges to honor the 8 principles of the HON Code of Conduct as drawn up by the HON foundation.

The responsible of the certified site commits to keep the site in compliance with the HON code principles for the duration of the certification.

Although measures such as a complaint mechanism, the periodical review and the automatic surveillance mechanisms are put in place to guarantee the compliance of the certified website with the ethical principles of HON as much as possible, incidental inaccuracies cannot be completely excluded. In no event the HON foundation and/or its partner(s) can be held liable for any damages resulting from the use or inability to use HON certified websites nor can the HON foundation and/or its partner(s) be held liable for the content of these certified websites, including, but not limited to the information of third-parties or hyperlinks accessible via HON certified websites.

The certified website is responsible for the content of its website, unless otherwise provided by law.

 

>> More information about the HONcode?

You will find below the elements identified by the HONcode team at a precise date to justify the respect of the 8 ethical principles.

The content of this certificate has been collected and written by the Health On the Net Foundation (HON) and should not be used without previous permission granted by HON. A request for permission can be sent to: HON.

1. Information must be authoritative
Chris & Fiona Heslehurst are not medical professionals.
the website was created and is maintained by our members Chris & Fiona Heslehurst, who are the proud parents of Leah and Lucas. Leah was born in 2006 and diagnosed with Kleefstra syndrome at 1 year of age.
  (23 May 2012) - Link

For the collaborative platform:

You should assume any information you read on the forum is not medical advice unless it specifically states otherwise, and the author provides details of his/her accreditations.
This forum is administered by Chris Heslehurst.
All members/moderators/administrators must respect others while posting on this forum and must be honest and true in anything they post.
Moderators/Administrators of this forum reserve the right to remove and/or modify posts of others should they be deemed unacceptable or unsuitable for the forum. We will PM or email you advising the post has been modif...
(30 May 2012) - Link

2. Presentation of the site
Mission:
Mission Statement
- To allow parents of newly diagnosed children to find this website using a simple Internet search.
- To provide support to parents of children diagnosed with Kleefstra syndrome by allowing members to share their experiences on our forum.
- To provide and maintain a central resource and point of contact for anyone who has an interest in Kleefstra syndrome.
- To provide a place for Medical Professionals to gain direct feedback from parents of children that have been diagnosed with Kleefstra syndrome.


  (23 May 2012) - Link

Audience:
Please be aware that we are a community that provides internet support for parents of children with Kleefstra syndrome.

  (23 May 2012) - Link

Purpose of the website
Any information provided on this website or our associated forum is designed to complement, not replace, the relationship between a patient and his/her own physician.
  (23 May 2012) - Link

For the collaborative platform:

The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician.

(30 May 2012) - Link

3. Confidentiality
Privacy Policy
Last Updated on Saturday, 21 April 2012 12:10
  (23 May 2012) - Link

For the collaborative platform:

Any post you make on the forum is only visible to all other members of Kleefstrasyndrome.org and is not visible to any other party.
All members are able to modify or delete their own posts should they wish.

(30 May 2012) - Link

4. Information must be documented: Referenced and dated
Link to Unique provided: http://www.rarechromo.org/

Only data for one sample are displayed among those selected.
Information reproduced with permission, from Unique's Kleefstra syndrome leaflet.

  (23 May 2012) - Link

For the collaborative platform:

Where appropriate you must provide clear references to source data and, where possible, have specific HTML links to that data.

(30 May 2012) - Link

All pages and articles are dated
 
Last Updated on Tuesday, 01 May 2012 12:49
  (23 May 2012) - Link

For the collaborative platform:
All posts and comments are automatically dated.

Thu May 03, 2012 8:49 am
(30 May 2012) - Link

5. Justification of claims
This principle is not applicable for this site 

For the collaborative platform:

Any claims relating to the benefits/performance of a specific treatment, commercial product or service will be supported by appropriate, balanced evidence in the manner outlined above in.

(30 May 2012) - Link

6. User support and adequation
E-form provided.
Contact Us

  (23 May 2012) - Link

For the collaborative platform:

This forum is administered by Chris Heslehurst who can be contacted directly by email or by using the contact us form on the website.

(30 May 2012) - Link

7. Disclosure of funding sources
We do not receive any funding from any source what so ever and the website was created and is maintained by our members Chris & Fiona Heslehurst, who are the proud parents of Leah and Lucas.

  (23 May 2012) - Link

For the collaborative platform:

The forum administrator and moderators are in their roles voluntarily and do not receive any payment whatsoever for their work.

(30 May 2012) - Link

8. Advertising policy
We do not display any advertisements whatsoever and do not receive any income from any information or links we display. Any third party links are provided as we believe they are related to our Website topic and are provided solely for the benefit of our members and visitors. We are not responsible for any content held on any third party Website linked to or from our Website, nor do we endorse any of their content.
  (23 May 2012) - Link

For the collaborative platform:

The website administrator's do not display any advertisements whatsoever and do not receive any income from any information or links we display.
While we permit you to provide links to products/services they must only be used where appropriate and have no benefit to the poster monetary or otherwise.

(30 May 2012) - Link

HONcode status

You have your own website ? Ask for the certification!

Download the free HONcode Toolbar! Search to the HON database of certified websites.
Download the free HONcode Toolbar: Automatic verification of the certification status of health/medical websites.



Principles Search HONcode sites © Health On the Net Foundation