The organisation « Our Little Stars » welcomed us for a day of sharing and awareness raising of organisations working for sick or disabled children. We set up our stall together with Solhand’s and many others, in the gymnasium of Cruseilles. Informing, getting known, sharing, , handing out our little survey and selling a few items knitted by the volunteers of the Malakoff-Mederic Relay, we had no time for rest….
According to the rules of « Our Little Stars », profits made by the professionals that were present were equally shared between all the non-profit organisations attending the day. This is why we received a cheque for € 140.
The day ended with a moving baloon release symbolizing the 2,500 children suffering from cancer, each year, in France.
Many thanks again to « Our Little Stars » for this wonderful day. It is diarized for next year.
During the day, we handed out a survey to visitors and exhibitors . 66 people answered our questions
Less than half of the respondents were able to give the exact definitions of rare (45%) and orphan (33%).
Only 43% of people know the number of known rare disorders and 32% the number of people suffering from rare disorders in France
On the other hand, globally, the general public knows that rare disorders are not all known, not all visible, not all genetic, not all with a physical expression, and do not all have a treatment.
A few people (1%) think that patient organisations are funded by the government and some (11%) think all the patients’ organisations benefit from the funds collected during the French Telethon. …… and that is not the case….Alas !!!!
Thus there is still a lot of information to spread to the general public.