Rare diseases exist and progress is being made

The rare disease day was celebrated on February 28th. Although this day aims to raise awareness about rare diseases and place them as a priority in the social and health agenda, any time is time to talk about rare diseases. Why not now.

A truism that we all agree is that research is essential for the treatment of rare diseases, such as multiple myeloma, for example. Myeloma is an incurable blood cancer that affects the bone marrow, is considered one of the rare diseases of higher incidence. In my country, Spain, affects about 12,000 patients, with two thousand new cases each year, so research is essential.

No rare disease should be left uninvestigated, finding appropriate treatment is essential to improve the quality of life of patients. Research is key to continue advancing in the diagnosis and treatment of these diseases. Thanks to the scientific community in recent years, great and important advances have been made regarding the treatment of multiple myeloma, in fact it has managed to slow down its evolution and reduce symptoms. This is allowing patients to have long periods of remission that make it easier to coexist with myeloma.

In Spain, where i live, there's the spanish community of patients with multiple myeloma (CEM) which is a non-profit organization constituted in august 2015 and is born from the need to help, support and offer serious and truthful information to all patients who suffer from the disease. This organization has positioned itself before the administration and health professionals to be an important voice making decisions that may affect patients with this rare disease, being currently a member of Myeloma Patients Europe (MPE) with the scientific endorsements of the spanish group myeloma and the spanish society of hematology and hemotherapy.