Last year, I set up a new charity called Findacure in order to help patients with what we are calling fundamental diseases.
This came out of my personal experience of trying to find a cure for Black Bone Disease (also called Alkaptonuria), the rare genetic disease affecting my children. Ten years of fighting to raise funds, setting up an international research consortium and organising trials made me acutely aware of the uphill struggle facing all patients with such neglected diseases.
If so, please contribute here.
With best wishes and kind regards,
Dr Nicolas Sireau