Introduction

Children with rare diseases have not only medical problems but also often psychological problems. This is true not only at home but also at school. In the Netherlands 1 in 17 people have a rare disease which is exemplified in the Dutch logo for rare diseases. This implies that, for example, in a school with a total of 350 students an average of 20 children are walking around with a rare disease.

Project Target Group

The age range of our target group in this context is 10 –15 years (upper elementary school and junior secondary school). Children at this age are aware of their bodies and thereby also of any 'abnormalities'. The number of schools in the Netherlands is 11,000 and there are approximately 200,000 students per grade. We can achieve with our approach more than 800,000 students and 1,500,000 parents!

Project goals

The project has the following main objectives: (educational)

  1. Improving understanding and situation of children with a rare disease.
  2. Providing information to teachers and students about rare diseases with the aim of understanding of both the medical and psychological aspects of living with a rare disease.

We want to offer educational information to children especially a patient organization in their language and with a graphic design that fits children and then use CMTC as a concrete example. We want to offer this information in the form of an educational package for schools on rare diseases and via our website through a special website which operates through our existing website.

Project results

  1. Education kit for secondary school pupils superstructure and substructure for elementary school.
  2. Medical and psychological information leaflet in children's language and in both the Dutch and English within our website.
  3. The website information is readable on both computer monitors, tablets and smartphones.
  4. Our members, in this case children, are offered the opportunity through our website, securely, to exchange knowledge and experiences.
  5. Children can download a presentation in PowerPoint format and download an essay in MSWord format.
  6. On the website is a list of questions and answers for children in both the Dutch and English.
  7. Children can use the CMTC-OVM website for asking questions (answered by our medical advisors, medical psychologist and other people if required).
  8. Children are provided a page with interesting links to other websites etc.
  9. An option to website users to switch with a button on the screen to a more readable font for children with dyslexia.

Project status

1st of July 2015
The project is finished and the foundation has been prepared for many extensions! During July and August 2015 we are adding a lot of material and we will add more languages as well.

24th of November 2014
During our worldwide annual meeting on the 15th of November we have shown the concept of the website for children. The concept is based on two characters: a girl (representing the children at the elementary school) and a boy (representing the children at the secondary school). The topics will be presented by means of ´worlds´ such as a world about the skin. Inspiration has been gained from eg. Jules Verne.

10th of November 2014
We have found an elementary and secondary school which cooperate with the development of the website material (which forms the basis for the education material at the same time). The website development is in progress and we will give a demonstration during our worldwide annual meeting in the Netherlands. 

8th of September 2014
Now that the holidays are over, it is high time to share the status of our project “Youth Education Rare Diseases”. The 'requirements' are laid down so that we may set up a new base for the website and start with the design of the new website for children. These are whole new concepts invented to make our website attractive for children. Obviously, it is of crucial importance (especially for children in the category of 10-15 years and teachers of this category of children) to involve children and teachers in  the development of the website as they will become the actual users of the website. In this context, a primary school and a secondary school have been asked to cooperate. The intention is to show part of the new website during our global general meeting in the Netherlands on November 15, 2014.

To finance the teaching materials project a separate fundraising program has been started. More news about this will follow soon.

27th of July 2014
The total project estimated budget is € 113,665 and at this moment we have covered € 44,200! Thanks to Fonds NutsOhra (Netherlands) we can start with the development of the website for the children. The requirements have been documented and are currently being reviewed by a number of people. We hope to be able to start in the beginning of August with the actual website development.

Simultaneously we are working on funding for the other part of the project regarding the school material development and distribution. Do you also want to reach a large group of people and want to give a concrete expression to corporate social responsibility then this is a great opportunity!

Do you want to know more about this project, please send an email to This email address is being protected from spambots. You need JavaScript enabled to view it..

Fundraising

The website part of the project has been financed and now we are working on raising funds for the education material.
More information regarding our fundraising program

 

Sponsor options

               
Bronze (€ 5.000 - € 10.000) Silver (€ 10.000 - € 25.000) Gold  (€ 25.000 and higher)
  1. Listed on CMTC-OVM website sponsor page with link to sponsor website.
  2. Monthly project status update.
  3. Invitation for session with sponsors/partners for maximum use of partnership with CMTC-OVM available tools/communication.
  4. Contribution in 2 terms.
  1. Listed on CMTC-OVM website sponsor page with link to sponsor website.
  2. Monthly project status update.
  3. Invitation for session with sponsors/partners for maximum use of partnership with CMTC-OVM available tools/communication.
  4. Logo sponsor on education material.
  5. Dedicated accountmanager for support and advice optimalisation partnership with meeting (possibly video conference) once every 2 months.
  6. Contribution in 4 terms.
  1. Listed on CMTC-OVM website sponsor page with link to sponsor website.
  2. Monthly project status update.
  3. Invitation for session with sponsors/partners for maximum use of partnership with CMTC-OVM available tools/communication.
  4. Logo sponsor on education material.
  5. Dedicated accountmanager for support and advice optimalisation partnership with meeting (possibly video conference) once every 2 months.
  6. Sponsor name added in press announcements.
  7. Sponsor is invited for bi-monthly diner (if feasible regarding travel and costs).
  8. Monthly contribution.

Sponsors

 ViryaGroup Signature Horizontal RGB LB