CdLS World federation Council

the council of members for the CdLS World federation

Find messages, announcements, preparations for and between members of the CdLS world federation

To see which members participate in this blog!

The federation really needs all your contributions; this can be information to dissimilate, experience stories, news relevant for our community, events you think are important. But also we need your levy, please check if you levy for the year(s) is done!

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Report from Uganda asking for advise/support

a Report from Uganda. The CdLS Foundation Uganda still would like to become member of CdLS World. ... Read more…
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Update of the CdLSWorld website

The CdLSWorld website is updated, find out more about it... ... Read more…
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Flyer for World conference 2019

Publication of the flyer as the early announcement for the world conference 2019 in Germany ... Read more…
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Support for Colombia - fast response needed!

You may recall from the Council meeting in Brazil that we agreed to offer support to new or yet-to-be-formed groups on a practical level. Colombia have their first ever family meeting/congress this weekend and this support has been offered. We agreed to send expert professionals to new groups to help them learn and educate local professionals. ... Read more…
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Data Protection Issues for EU based Members - Important

On 25th May 2018, EU law is changing with regard to Data Protection. The new regulations, known as GDPR (General Data Protection Regulation) change the way we, as support groups, are allowed to hold and process personal data about our families. There is also a significant change to how you are allowed to contact and communicate with your member families. ... Read more…
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Rare Disease Day 2018

Highlights of Eurordis email 22nd February 2018 regarding this global event day, 28th February 2018. ... Read more…
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CdLS-NET – ‘Deciphering common regulatory networks and pathomechanisms in CdLS and CdLS-overlapping phenotypes’

We have received a request from Researchers to support a application for funding in the European program 10th JOINT CALL FOR EUROPEAN RESEARCH PROJECTS ON RARE DISEASES (JTC 2018) ... Read more…
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News about Rarissimas (Portugal)

News about Rarissimas and Casa Dos Marcos in the weekend of 8-11 December 2017 We were informed by a CdLS family in Portugal and afterwards by news on the facebook pages of Rarissimas that the management of Rarissimas is suspected of money laundering for private purposes. The news was brought on Portugese Television and it also brought suspected behavior of associated ... Read more…
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Help Brazil with re-evaluating Travel and Expenses

We Kindly request the federation members to re-evaluate the travel and expenses of your Medical Director and of your countries national leaders if they were refunded as a speaker or other form of conference supporter ... Read more…
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International CdLS Guidelines

We have had a meeting in Birmingham (UK) to put together the final list of scientific recommendations based on the work the many working groups have so nicely done so-far. On 7 Januari The international team announced the final documents. ... Read more…

About the website contents

All of the information contained within these questions and answers is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know, contact see below.