Merry Christmas from "The Sick Invisible" to the Minister Lorenzin ... - Observatory for Rare Diseases

The association of sick rare “The Sick Invisible” wrote a letter to the Minister of Health Lorenzin , with the aim of raising awareness , once again, politics and public opinion on the issues that patients with rare diseases are forced to deal with every day. Issues affecting the daily lives of each and that the more they are felt on festive occasions, such as Christmas.
E ‘for this occasion that “The Invisible Sick” have decided to turn these words to Lorenzin:

“Dear Minister of Health On.Beatrice Lorenzin,
We are writing this letter to wish you a Christmas full of joy, serenity, prosperity and health.
All beautiful things that we, RARE SICK, are denied for a long time.

This letter written directly to the heart wants raise awareness and make people think on the situation of many Italian families where children and adults find themselves fighting against an evil little known or even not yet recognized.

People who have lost their dignity, their work, canceling completely to look for answers that nobody knows how to give finding himself alone in a world of indifference.

Doctors unprepared that instead of helping the patient bear their damage, sometimes irreversible, with inappropriate medications worsening their quality of life already so heavily compromised by highly debilitating diseases from the standpoint of physical, psychological and statement.

Doctors and psychiatrists who improvise, diagnosing depression and non-existent labeling the patient as a hypochondriac, delay diagnosis of years already extremely difficult.

Many of us have no obvious handicap because these ‘beasts’ devour us from the inside in an agony without end, day after day, we Invisible and therefore discriminated against, ridiculed, humiliated.

patients associations, aid groups are doing their best to raise awareness on the subject, but the political class what are you doing? How many broken promises, so many beautiful words that then there ‘was no follow-up.

What is better than a person’s life? Because this is what we are asking.

Exhausted from this situation that has lasted too long ask for immediate action by the competent bodies to ensure that patients receive the care pathway that protects their health, specifically ask the updating of the LEA and the ‘approval of the National Plan for Rare Diseases.

of our tree lights are turned off for too long, we are tired of being in the dark, we also have the right to a Christmas of joy and hope .

Congratulations “