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After seven years as president of a patient association for a rare connective tissue disease, I would like to make a greater impact for the society. Give more consideration for the impact of acute treatments on children and young adults and take the anxiety and pain treatment more into account.

As this causes a lot of psychological damage in the long run.

For this greater goal, this platform was founded with for these children and young people.

With this platform, we can have a greater impact for a much larger target group to achieve an even brighter future.

Our new challenge:

Actual improvement for the quality of life with the great mission: anxiety- and pain-free treatments in acute circumstances.
There are already so many remedies for pain, but unfortunately they are still not used when it is a “short” treatment.
How wonderful it would be if there was adequate management of acute pain, including non-drug treatments. This limits permanent psychological damage.

With this goal we also endorse the importance of research for effective medication to cure these and more rare disorders.

More information

We want to create the opportunities for all people with a rare disease. So they can enjoy life.

Our goals:

  • Enjoy life & wheelchair accessibility!
  • Scientific research for effective medication
  • Adequate anxiety- and pain-free treatments

because everyone has the right to enjoy life!

The platform


Together with your expertise we can empower this platform.

Thanks to committed professors, researchers, doctors and paramedics who constructively want to take on this challenge with me, we are this platform.

Thanks to all initiators and involved parties, we ensure a smile for every child and young person.



Multidisciplinary is the power!

If you have any questions about this platform or if you would like to be a part of realizing this social impact together, please contact us.

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