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Our mission underscores the importance of quality of life. Good healthcare is crucial for being able to enjoy life, participate in society, and stand resilient in life.


After seven years of chairing a patient association for a rare connective tissue disorder, I aim to have a greater impact on society. There is a need for more attention to acute treatments, where anxiety and pain management are given more consideration. After all, this has significant long-term psychological effects. With a greater passion to make society even more beautiful for these children and young people, this platform was created. Through this platform,, we can extend our efforts to a much larger audience to realize an even better future.

Concrete improvement for the quality of life with a major mission: anxiety- and pain-free treatments in acute circumstances. There are already so many pain relief methods available, but unfortunately, they are still not applied when something needs to be done 'quickly.'

It would be fantastic if there is adequate management of acute pain, including non-pharmacological treatments. This helps limit lasting psychological damage. This also underscores the importance of researching effective medication. to cure these and more rare conditions.

We want to create opportunities for all people with a rare condition to be able to fully enjoy life.


Enjoying life, wheelchair accessible!

Scientific research for effective medication

Adequate anxiety and pain management

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