There are thousands of diseases called "rare" because of the infrequency in which they have been detected so far. Today is the day that tribute is paid to the brave who fight against little recognized pathologies.
Among the partners of the Feder association, up to 2456 different pathologies are counted. This association has been created on the basis that unity is strength and although relatively few are affected by the various diseases that their partners suffer, everything is easier if they come together to fight together.
Little information about their pathologies
When someone suffers from a rare disease, either because he suffers it or because he has an affected child, the first obstacle he encounters is that, as a general rule, has to go through a real odyssey to get a diagnosis. For pure statistics, a doctor, the last thing that arises is that it is a rare pathology.
On the other hand, the lack of information on rare diseases extends to the rest of the environment and there comes the point that not only do you have to deal with an illness, you also have to live constantly giving explanations about what it is, what it is not and why it can limit you.
Need for support from society and institutions
You no longer just need moral support from the environment, but you need some understanding from society. The sick are not responsible for suffering from them, they have not chosen them and they deserve dignified treatment.
Apart from the needs that may be had at a social level, they also have basic needs to cover, and on many occasions their pathology prevents them from leading a normal life, which implies work and economic independence. That is why there are associations that fight for the rights of those affected by rare diseases. Its necessary to ensure the existence of financial aid to achieve a minimum guarantee of quality of life for the patient and for your family. Equally necessary are aid for the investigation of these diseases, since they have the same right to improvements in treatment as any other patient.
But above all, what they most need to know is that, They are not alone, they are simply a little more special and in many cases, Great warriors.