LRG’s Rodrigo Salas, member of the Board of Directors, was interviewed on Televisa Monterrey as part of Fundacion GIST Mexico’s citizen initiative to have February 28 declared “Rare Disease Day” in their home state of Nuevo Leon.
The group presented the initiative to the State’s Congress. They will vote on the proposal in January, and if approved, the Governor will declare “Rare Disease Day“ in the state.
Interviewed about the initiative, Salas indicated that their objective is to raise awareness about rare diseases in general, and GIST in particular. A rare disease is defined as one that affects no more than 5 in 10,000 people. With between 5,000 and 7,000 rare diseases, it is estimated that in Mexico that they affect around six million people.
Rare diseases such as GIST have seen increased numbers being diagnosed in recent years, but Salas stated that this is not a function of more people having a rare disease, but rather of improved diagnostic techniques and knowledge of these conditions. Proper education regarding diagnosis and treatment is still the biggest challenge to treating rare diseases.
In the state of Nueva Leon, it is estimated that 25,000 people have a rare disease.