February 29th marks the 9th international Rare Disease Day 2016 with the theme ‘Patient Voice - making the voice of rare diseases heard’ – it recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.
CENTOGENE again organized a charity event to raise awareness, inform and educate the public. Everyone was encouraged to get their skates polished and take off on the track for a good cause. Before the ice was 'burned', the interested public got background information on rare diseases and the challenges that every patient, family member and physician faces in managing a rare disease.
For every kilometre ‚burned‘ on the ice, CENTOGENE donates 1€ to patient organizations that are taking care day by day about patients and their families. This year, we support the Niemann-Pick support group, Hypophosphatasia Germany e.V. and the patient support group for Huntington’s disease.