WORLD RARE DISEASE DAYAsociacion MEF2C
Today it is celebrated the World Rare Disease Day, among which the syndrome our children suffer. These diseases affect 7% of the world population, there are about 7,000 described and of them 500 are the majority of cases and of the rest there are only dozens of patients of each one. In the case of the MEF2C Syndrome, there are currently about 70 cases described in the world, 4 in Spain.
The average diagnostic time is about 5 years, and in 20% even 10 years or sometimes it is never found. And once the family members get the correct diagnosis, in most cases there is no adequate treatment. That is why, as the slogan that this year has released FEDER (Spanish association of rare diseases), “Research is our Hope”.
We have all our hope in the research that Dr Stuart Lipton and his team are conducting in San Diego, California. Since we created the Association with the objective of raising funds for this research, we have already been able to send them € 44,000 thanks to the collaboration of all of you. When we visited the laboratories 2 months ago, we were able to see the great work they are doing and the good results they are getting. One of the drugs is already at a fairly advanced stage of the research, but we need to continue to send funds necessary for the next phases.
Our little ones strive every day to progress, and we are really proud of every little advance they get. That is why we will continue to fight for them, to achieve that long-awaited treatment that will give them a better future. We Look Forward Together With Hope, because The Impossible Is Just More Demanding.
Thank you with all our heart for your constant support! We will be waiting for you Saturday in Castellón in the Charity Festival for the Rare disease day, in favour of the MEF2C Syndrome.
We look forward together.