Foundation

Tyrosinemia Foundation

Worldwide research for improved treatment
The Foundation was set up to raise money for medical research into the rare metabolic disease, Tyrosinemia type 1.

In 2008, nobody (including pharmaceutical companies, the European Union or government) was interested in supporting research. No research, no progress.

That is the reason why this Foundation was founded.

Firstly, the Foundation was named Stichting Joris/ Joris Foundation (named afterwards Joris, the son of the Chairman). Because of globalisation, the name was changed to the Tyrosinemia Foundation.

The life expectancy of people with Tyrosinemia has greatly increased in recent years. However, there are still many challenges ahead to improve the treatments and also the quality of life of patients. More research is needed!

chairman Annelies Prent

Mother of Joris (patient with Tyrosinemia Type I) and founder of this foundation
‘Enjoy life, think in possibilities’


Treasurer Rick Sterk

Expert as an accountant, banker and as an interim professional.
‘With involvement and a people-based approach, you can achieve a lot in the world’


Secretary Gerda Tingen-Woldman

Originally a dietician, but an organiser through and through.
‘Let go of what was, accept what is and embrace what comes’


Postal address

Grasland 70
9205 EB Drachten
The Netherlands

 
 

 

It's hard to believe, but there are no
european guidelines for Tyrosinemia type 1 yet!

Contact

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Send us a message or call/ WhatsApp on +31 6 21159269

 



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