First conference of this kind for me
I got my kid’s diagnosis a month before the conference and was pretty devastated. The conference was very beneficial for us to understand the disease and to connect with other families.
It was great to meet and talk to doctors, exchange experiences with families and discuss option and hopes for rare disease treatments and cures. The conference was very well organized, the location was great, and overall it was a great success.
Unfortunately there are not many resources available for rare diseases. This was the main contributing factor in my struggle to get the children’s diagnosis that lasted over 15 years. Conferences, natural history clinics, interactions with medical professionals will all help future families identify and deal with these diseases.
It was very good to see people from different countries that visited the conference. It is only working and collaborating together will we be able to find a cure. There are several similar organizations around the world putting together conferences for Lysosomal storage disorders, all of them presenting highly valuable information. Three of them were organized within one month. That would be my suggestion for the future is to co-ordinate conferences in the different parts of the world and spread them apart in time.