Rare Disease Awareness Day

Today is Rare Disease Day, a special day to raise awareness for rare diseases. As a medical doctor (clinical geneticist), Professor Conny works with patients with rare diseases every day. Most of her research is dedicated to children with a chromosome 6 disorder. Not much is known about these rare disorders and she hopes that her research will improve the future perspectives of the children with chromosome 6 disorders.

Currently the entire Chromosome 6 research is paid by crowd funding activities carried out by parents. Professor Conny has now decided to support the project by walking 1200 km along the camino de Santiago de Compostela. The goal is to raise awareness and money for the Chromosome 6 Project.

In 5-weeks-time, Professor Conny will take the first steps of her walk, and we will share her adventures on this blog. In the coming weeks we will update you on her preparations for her journey. You can subscribe via email to follow her. You can support her during her 1200 km walk by donating to the Chromosome 6 Project. In our next post we will share with you which route she is going to walk and why. 

Professor Conny is wearing her blouse with zebras for Rare Disease Day

Professor Conny during a training for her walk