was set up in March 2017, by the initiative of some parents of children affected by cobalamin C deficiency, from all over Italy, with the purposeful intention to support scientific research and every initiative aimed at improving the quality of life of patients and their families.

The founders met online, where people often seek refuge when they encounter a disease with a strange and complicated name (Methylmalonic Acidemia with Homocystinuria) for the first time. However, once the initial pain and confusion have passed, people quickly learn to pronounce it impeccably and to type it repeatedly into search engines, hoping to find answers to questions they never imagined they would have to ask and in search of people who are facing the same problems and fears.

In February 2013, after having met other parents and realized that she was not alone, a mother found the courage to create a virtual “family”: a group in which people could recognize themselves, share experiences and help each other as much as possible. More or less at the same time, a trial of an experimental drug involving a large number of families from all over Italy was started at Bambin Gesù Children’s Hospital in Rome: this event gave the chance to transform many virtual friendships into real ones.

In 2014 such “family” was so numerous that the idea of creating a specific association for the cblC began to take shape. This step, ambitious and too demanding for many, remained just a good intention for a while. Until the wide participation to the first data collection project for statistical purposes within the group members rekindled hope and determination once again. A few years later, in 2017, thanks to the tenacity of five families, cblC aps was born, with a motto that is also a mission: