Rare is Many, Rare is Strong, Rare is Proud.
This is the motto for Rare Disease Day 2021.
There are many of us who are affected by rare diseases. It is often thought of as a problem that occurs to few, but it is estimated that in Europe there are 30 million people affected by rare diseases and 300 million worldwide.
When we founded the Association Conquistando Escalones, our Limb-girdleMuscular Dystrophy 1F / D2 was diagnosed only in our family in the whole world, counting around sixty affected people. Today, after 6 years of constant work, our association has managed to find other people affected by the same disease as ours in different parts of Europe and even the United States.
We are weak, because our Muscular Dystrophy takes away our strength, but although our muscles are severely compromised by the disease, our commitment is great and our desire to fight for a better future even more.
We are proud, not only of all the goals achieved in so few years by our Association, but we are even more proud of our researchers, because they put in an unusual effort, passion, dedication and humanity. We have been fortunate to be able to collaborate with them and make them part of a group that has the common goal of finding a cure for our disease.
We still have many steps to conquer before reaching a cure. But together we can achieve it!
Together we are stronger!