Psoriasis action joins in the world day for rare diseases.

Barcelona, March 2012- Psoriasis action, State Association of people affected by psoriasis and their families joined, once again, to the world day for rare diseases, which was held on Wednesday, 29 February. There are some clinical psoriasis ways, like erythrodermic psoriasis and Pustular psoriasis, which affect a very small percentage of patients (less than 1%) and on which action Psoriasis wants to claim greater attention, so that they can be also considered rare diseases. According to Juana Maria el Molino, President of action Psoriasis, from the Association, work to promote the research in any of the various forms of psoriasis, as well as to disseminate, both to those affected and to society in general, the characteristics of the various types of psoriasis and the way that these can come to affect the daily life of the patient ”.

Erythrodermic psoriasis occurs when the lesions of psoriasis affecting more than 90% of the skin surface. The skin is very red, hot and sheds abundant way. It is a severe form of psoriasis that can endanger the life of the patient, which usually requires hospital admission, but fortunately is very rare. Pustular psoriasis is a serious and unusual, complication in which appear sterile pustules (pus pimples not infectious) on plaques of psoriasis. There is a form usually located in hands and feet, and widespread. The widespread, very rare, is also very serious and often require income hospitalario1.

However, neither the Pustular psoriasis and erythrodermic psoriasis are considered still ER. In this regard, Dr. Miquel Bank Pibernat, dermatologist of the University Hospital of Sabadell – Corporació Parc Taulí, Vice President of the Spanish Academy of Dermatology and Venerology (AEDV), and medical adviser to action Psoriasis, claims that should be so destinaran public resources for their research and to promote clinical trials. Its low frequency makes pharmaceutical companies not conducted clinical trials of new drugs to demonstrate that they are effective in treating these rare disease clinical forms, because the investment is very high and the return in sales bass, which is often the case with rare diseases. If there are no clinical trials showing effectiveness in these diseases, the Spanish medicines agency does not authorize the use of new medications to treat them and not included them as therapeutic indication in sheets of these medications, which creates a legal vacuum and limits its use in patients with these clinical forms of the disease. Their inclusion as minority or rare diseases could help solve this problem, because clinical trials promoted with public money could encourage and also you could press that the medicines agency lowering the requirements to include these clinical forms of psoriasis in the indications in the data sheet of the new drugs ”.

About action Psoriasis

Psoriasis is a State-level Association, composed of people with psoriasis and their families, which has been declared a public utility entity. In its nineteen years of existence it has become one of the most active and participatory State patients associations.

Throughout the year, Psoriasis action organizes activities, disseminates the latest research in treatments and supports those affected, to claim their rights and to increase their quality of life.