375 cities, 961 visits, 852 visitors. Those are some data, coming from analytics, our website www.progettomitofusina.com recorded in year of activity .
So, we have been visited by people from New York to Samara, from Bejing to Naples, from St. Petersburg to Palo Alto, through Port Elisabeth and Pape’te, Wynnewood and Reikiavik (as showed by the picture).
Many people from all over the world have opened our pages. We were just four patients when we started, nowadays we are more than 150 coming from everywhere and talking lots of languages. We have come a long way, but we are not there yet.
Recent studies tell us that people suffering from Mitofusin 2 related neuropathies(CMT2A/HMSN2A form and in its variants) might be a few thousands in Europe and United States. Diagnosed cases are, though, still too few and patients are not in contact with each other. But they exist, according to researchers, and we want to find them, whenever they are!
Charcot-Marie-Tooth type 2 A is a rare disease affecting one in 100.000. There are many patients throughout the world not yet able to name their disease or just to collect information about it. Help them find us! Visit our website, follow our blog and Facebook page, share, share,share! It is extremely important that those people get to us.
Rare diseases are little known and not attractive for pharmaceutical companies which works on large numbers. Finding other patients to build a large group is essential for us because alone we are rare, but together we are stronger!
Thank you for joining us on this journey, we need you further yet. There is still a long way to go. Thank you kindly from Mitofusin 2 Project!