Jaarverslag 2018 vereniging Cornelia de Lange syndroom

Verhalen en Nieuws

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The past year

© Vereniging CdLS 
May 2019


Yearly family gathering

On Saturday, October 6, 2018, there was a great organized meeting day, this time we were guests at Hotel Oranjewoud in Heerenveen. We were able to meet many people again and we all enjoyed ourselves. This time the organization was co-organized by the Jorwerda family (Lotte) and the hospitable people of Oranjewoud.
What a great space was available to us that day; there was a circus school where everyone could learn a circus truck, Paula and Olivier also put their best foot forward. The usual 'How is it with everyone again showed the development of our CdLS Kanjers. We also welcomed new families. Furthermore we had a book presentation of Monique Kroezen, her novel based on her experiences as Justin's mother is very recognizable for all of us.
Finally, there was a lot of publicity for the world conference in 2019, with the help of Ingrid were also inventoried the wishes.
In 2019 the family day will be held during the World Conference and then even for 2.5 days.

Request for subsidy 2019

In the autumn, the board took care of the subsidy application and we can once again announce that this subsidy application has been approved. On the basis of a budget, we have identified a number of activities for which we can use the subsidy funds. The subsidy will be used for the following purposes;

  • Facilitate Contacts between families and others involved with the syndrome
  • Provision of information
  • Participation in representation of interests 

CdLS Book

With the help of Mieke, Ruben the photographer and a number of families that have followed, we have made some big steps for a new book about CdLS. It promises to be a beautiful book and it will be presented at the World Conference!

Membership

The subsidy is only granted to associations with a suitable objective and a minimum number of 100 members. In 2011 we reached this number of members! However, the number of members is still around the critical threshold of 100 and we strive for 150 Dutch members. In our opinion, this should be possible through specific actions.
At the time of this report we have > 100 members. However, the measurement is made on the basis of paid contributions and the discipline in this respect could be improved. Wim is going to try that we are better on top of this in 2019 because it did not look good in October 2018, but this turned out to be mainly because people had simply forgotten to pay the contribution. There have been new members in the past year.

Eddie and Wim: can you get numbers; number of members, number of new members and number of cancelled members 

Activity plan

As stated above, from 2012 onwards, subsidies will only be possible by presenting a clear budget with proposed activities. The budget for 2019 includes the following activities chosen by the Board; 

  • Facilitate Contacts between families and others involved with the syndrome
    • World conference 
    • facebook group
    • Contact parents
      • The website
  • Provision of information
    • World conference
    • Ask the expert
    • Expert articles via world conference
      • The website
  • Professionalization 
  • Miscellaneous

Explanatory notes:
1)
We will devote almost all resources to peer contact and information provision VIA EXCLUSIVE the world conference. This is a costly event, but a very effective way to achieve both of our main goals. Of course not everyone will come to the conference, but indirectly still benefit from the information thus created!
2)
Professionalisation: The composition of the board has changed enormously frequently in the past three years, which entails risks in the transfer. This is why it has been decided in consultation with the Board of Trustees to outsource even more tasks in 2019. However, we do foresee a difficult year in 2019 due to the transfer. So please understand that there is a bit of sloppiness on the left and the right. Send an email or call us if you see something that could be improved.

World-federation

As is well known, our association makes an active contribution to the CdLS World Federation "CdLS World". Also this year we made a financial contribution. We mainly work together on the website. Due to the various international contacts, it is possible to make good information available.
We have also contributed to the preparations for the World Conference 2019. This will be held in cooperation with our German sister association in Germany, close to the border (Bad-Neuenahr/Ahrweiler).

Board

In 2018 we said goodbye to 3 board members: Arnoud, Marcel and Jacqueline. We thank Jacqueline, Arnoud and Marcel for their efforts. Eddie Jorwerda has taken over the function of Jacqueline (Secretariat) and we hope that he will soon feel at ease in our board. The position of Marcel (Treasurer) has been taken over by his father Wim Scharphof, so it remains in the family. Unfortunately we haven't found a replacement for Arnoud's role as director yet. This role mainly concerns the organizational improvement of the association. Especially because we want to outsource more an important role. As long as this vacancy continues to exist, Gerritjan will take this on board.
However, Marloes Nijkamp joined the board and will mainly focus on the information about CdLS.
Mieke van Leeuwen is still a highly appreciated volunteer who wants to continue to help with the newsletter. Ingrid Benoist has reached out to help organize the conference in 2018.
For this Mieke and Ingrid, thank you very much.

We also try to make use of voluntary contributions, such as the beautiful columns by Monique Kroezen.
 

Internet

DThe website is now a much visited site.  We are also active on Facebook. This is an enormous success and also contributes enormously to our sense of association. If you have always had a resistance against Facebook.... We believe that the current participants have a lot of fun and satisfaction with it. 

Unfortunately there are still not enough new articles on our website. 

With the help of the Waihona Project (which will continue as the WaihonaPedia foundation in 2019) we try to increase this number.

Advocacy

As in recent years, we work together with the platform organisation Every(in). Everyone stands for Everyone Inclusive; or everyone should be able to participate. We also feel at home with that theme. 

In addition, we have joined the VSOP as a member, which mainly concerns the representation of medical interests, that there is sufficient attention in the hospitals for CdLS and that the health insurers are better informed about our needs.

We are also a member of the CDLS World Federation, which became a member of Eurordis in 2018. This means that we can now also think along with you in the European field and make adjustments where possible.

    • Membership; By joining these organisations we can influence the policy of the European and Dutch governments, the hospitals, the insurance companies, the education sector and other governments (especially municipalities) together with other affiliates. 

Collaboration

The association consists of members and volunteers, but through the subsidy we also have opportunities to be strengthened with paid employees. In 2016 we found a new IT partner in NoesteIJver.nl and also with XWiki.sas. The Newsletter layout is provided by KEET graphic design (Dagmar Wijnants).

In 2018 we tried to outsource the secretariat to the MEO foundation, which has a framework agreement with PGO-support to support organisations like ours. The desired progress was not entirely achieved here, especially because the Ministry of Health, Welfare and Sport has decided to make it even easier to outsource tasks from 2019 onwards. This gave us some uncertainty: we are running too fast, but also MEO had to prepare for a huge customer increase and therefore did not only pay attention to us. 

Newsletter

The newsletter is regularly published with the support of a generous donor and we are proud of its quality and content. We strive for a complete integration of the newsletter and the website so that you can see all the articles on the website as well.
However, the number of articles is somewhat below our target. Especially if we compare it with international publications and publications from the Netherlands and Belgium, which contain interesting information for you. We would like to receive an even larger part of our articles from the other associations around the world. Translation is the bottleneck. Translation volunteers are very welcome; there are so many fantastic experiences, stories and knowledge about problems to be found on the websites and newsletters of the other associations. Knowledge of English, German, French, Italian or Spanish is very welcome.
On the other hand, you as a family have made a greater contribution with beautiful and/or emotional stories.

World conference 2019 Netherlands and Germany!

This year we have been very active in organising a conference on CdLS in the Netherlands and Germany in the summer of 2019. We think it would be great to organise a unique event for families, where the exchange of experiences in a relaxed atmosphere is combined with the provision of information by experts from all over the world. 

Together with the association from Germany, Marcel and Gerritjan started the preparation on behalf of the board. Unfortunately it was not possible for Marcel to make his effort because, due to a new job, the number of hours he had available could not be increased. From September Ingrid Benoist came to the aid of Gerritjan as a volunteer. 

Waihona-project en WaihonaPedia: 2016 - 2018

The project has almost been completed this year (4 more baskets in 2019). Gerritjan has such an important role in this project (project management and visionary) that Arnoud represented our association in this project (to avoid conflicts of interest). Due to Arnoud's departure from the board, a large part of 2018 has not been filled in by our association. Marloes Nijkamp will work his way into the balance, step by step, with a view to the private work administration.
The project has the enthusiastic support of the University Medical Centre AMC (Amsterdam). This is because the AMC officially started in 2016 as Expertise Centre Cornelia de Lange syndrome (within the framework of the National Plan for Rare Disorders) (see below). Raoul Hennekam, Leonie Menke and Sylvia Huisman see the website of the association as a great way to help each other. Because in WaihonaPedia a blueprint of a new kind of website is being made (suitable for our association), the AMC introduced a large questionnaire, suitable for CdLS.
There is also a development app where you can keep track of how your child/son/daughter is doing.

International Guidelines Cornelia de Lange syndrome

2018 will be a memorable year because our enthusiastic (international) experts, inspired by Raoul Hennekam, have managed to get a publication in one of the most prominent scientific publication channels. Nature-Review-Genetics has judged the work as such that for the first time in its history a publication of such a rare disorder has been made. In particular, the demonstrable collaboration between families and scientists is seen by Nature as a unique example. In addition, the number of nationalities that participated in the publication is considered unique. It outlines the success of our association and the world federation that there are many Dutch authors included. Gerritjan has also been included as an Author, but he really sees this as a sign of: 'all of you'. So if you put the publication on Nature: read where you now see the name of Gerritjan and your own name!

We have also started a follow-up project to translate these guidelines into accessible text so that you do not have to understand scientific terms. Marloes Nijkamp is the point of contact here.

Experts and a national Expertise Centre CdLS

Gradually, we are able to bind more and more Dutch experts to CdLS.
The AMC (Amsterdam Medical Centre/University) is provisionally recognised as a multidisciplinary expertise centre CdLS. This is based on an initiative of the EU to improve expertise for rare diseases.
We will continue to do our best to expand our network of experts in order to provide you with the best information at all times. I would therefore like to take this opportunity to thank our SUPER expert, Mieke van Leeuwen, once again. For more than 10 years our support and stay!

Volunteers

In order to develop our volunteers, we offer training courses in cooperation with PBL Support. This is a very diverse package of training courses, with which you can invest in yourself as a volunteer. This can of course help you to develop yourself as a person. These trainings are free and are organized in Utrecht. For more information about these courses, please refer to the website of PGO Support:
http://www.pgosupport.nl/page/Academie/Cursussen

In 2015 Sylvia, Monique and Gerritjan bv followed the training: Writing for the web. Other examples are:
Writing journalism: a better article
Project management
Social media: strategy and organisation
Patient participation in guideline development

Contact parents

The contact with other parents is a beautiful part of our association (or community in social media). But it is also quite a step. Also for the parents who are contacted it can mean something. Things that you yourself have been confronted with and may have processed come up again. That is why it is important to acknowledge and appreciate this. We see that many first contacts are made through Facebook and the website. But there is also a need for people who want to share their experiences over the phone, or possibly even visit each other.

's-Hertogenbosch,
July 2019
  

Als je opmerkingen of ideeën hebt ga dan naar deze pagina

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