Cost To Add Name To House Deeds?

Why 'even the sick fibromyalgia, ME / CFS and MCS write regions to seek recognition? Homeopathy

Abstract . I heard only a few days ago that all the associations for rare diseases, patients and supporters have joined together to send a joint letter to all regions to seek recognition and allocation of a Regional Code of Exemption for Rare Diseases not yet included in Annex 1 of Decree 279/01. And that this project will end 'on 28 febbraio.Cosi we are to actively participate and collect signatures for the encefalomielte myalgia syndrome chronic fatigue, fibromyalgia and sensitivity' multiple chemical.

The question that we set and ': our diseases are rare? Foreign Epidemiological studies say no. Worldwide, these diseases are recognized and tabulated as a chronic debilitating diseases and not rare. also confirmed by the Ministry of Health in response to parliamentary question Mr of Borghesi, but also concludes by saying that " in Italy is via a large number of fibromyalgia patients (from 2% to 8% of the general population), and (the same goes for me / cfs) with different conditions of gravity and, consequently, with different care needs. So there is at present an objective difficulty in identifying correctly, both in terms of prevalence of clinical definition, the forms to be considered for possible inclusion in free of chronic diseases, according to the criteria laid down by Decree No 124/1998 on the clinical severity, the degree of disability and the burden of the fee arising from the cost of treatment, with consequent failure to make a proper assessment of the impact this would have to be integrated in economic and organizational. " for sensitivity 'multiple chemical instead," he considered that the lack of evidence in international scientific literature does not allow the time to consider MCS as nosological entity identified, and that in any event, the National Health Service through the essential levels of assistance (LEA), is already able to provide appropriate assistance to those who show intolerance to 'exposure to chemicals. Moreover, the lack of established knowledge from the clinical point of view, diagnosis and treatment, does not, at present, to provide for inclusion of the syndrome of rare diseases, because of the problems that would place in a timely and correct in recognizing the recipients of the benefits of the law, and in the identification of benefits, including between the LEA, effective and appropriate for treatment, monitoring of the disease and preventing further deterioration "

What does this mean? In a nutshell means that since the disease can manifest itself in different forms and not being able to demonstrate the degree of gravity ': first do not recognize it at all! I wonder then why' is not used in Foreign same protocols and diagnostic pathways, where diseases are recognized, to define clinical severity, degree of disability and burden of the fee resulting from the cost of treatment in order to recognize them in an objective manner. Regarding the sensitivity 'multiple chemical, know the evidence of scientific studies used in all countries of the world for the recognition of the disease. Send this letter would put them in front of this fact and urge them to decide . If we respond, as is already 'have done, "diseases are not rare and there are no scientific studies could answer:

1. Prove doing a study on Italian territory epidemiogico
2. Put them in disabling chronic conditions with the same code used to exempt foreign
3. send them all the scientific studies relating

Why send a letter to the Regions to seek recognition and allocation of a Regional Code of Exemption for Rare Diseases not yet included in Annex 1 of Decree 279/01? From document written by the association shows that "A new proposal for a redefinition of the LEA by the current Ministry of Health, has long been blocked by the Treasury, which it considers the funding (Article 81 of the Constitution); currently no assumptions one can see the release of the measure " instead on the recognition of disease" for chronic for example, the diagnostic possibilities should be established / routine and care centers located throughout the territory. " " for Rare Diseases, as well as the basic criterion for the low prevalence (not more than 5 cases per 10,000 people), there are criteria of severity, specificity and non-availability of appropriate treatment and care and consolidated. The regions that do not pay back in a situation of budget, they can enter in their Regional Registers for Rare Diseases, more diseases than those identified in the National Register, giving them an exemption code to the regional level. "

The content of the joint letter that will be 'sent to the regional departments and regional governments Health, Ministry of Health, National Institute of Health, the National Rare Diseases; UNIAMO FIMR request for recognition and award of a Regional Code of Exemption for Rare Diseases not yet available in Annex 1 of Ministerial Decree 279/01 and ' available HERE.

How can' join? E 'can comply with the letter REGIONS whether as individuals, carriers of a rare condition that such groups / associations. -The letter asks that all diseases not included in 'Annex 1 of Decree 279 / '01, will be incorporated in the regional registers rare. -To join: Enter directly signatures HERE: writing, , , or name + last name + mail + name of the alert condition. Alternatively, collect the signatures of their own group and supporters (doctors, researchers, friends ...) through a subscription on their website / blog / FB pages, forum. for fibromyalgia and ME / CFS are collecting the HERE
After the collection of signatures, February 28, send the list of signatures collected go109mr@gmail.com .

The signatures collected and illnesses reported, will be attached to the joint letter sent simultaneously to the Regions and the other intended recipient. 'S sending a joint letter must be followed, in cascade, by' sending the signal on each of the conditions attached. In short, the format will be inserted and procedures for setting the PERSONAL LETTER reporting of its rare disease to the same recipients. For questions or problems, reply here or write in your dashboard or send mail to 'address: dirittinonregaliperimalatirari@gmail.com .

form for collection in paper form : download the form for collecting signatures and collect signatures from friends and family and send the same email.

Source: http://dirittinonregaliperimalatirari.blogspot.com/