My article published on the site disable
Torino . On 16 February, and 'held the second event of the sensitivity of patients' multiple chemical myalgic encephalomyelitis chronic fatigue syndrome and fibromyalgia. The summary of the day 'was told in person by Robert Moss, president of the Association mcs illness Turin.
Abstract . After assembling the material for the event, thanks to the help of Anna's husband Alberto Amedeo, resp. of the event, the same, I announced that we had a meeting with the secretary in charge of the office communications David Bullen, with his press secretary and the presence of investigative journalist Vera.
The encounter with the ' department. We were allowed to be present, with 10 people. Each of us has explained very carefully and in detail the problems of disease from the point of medically and socially. The Secretary took note of our concerns. Then through my own personal knowledge we have is that the Secretary met a Regional Councillor, Dr Luigi Cursio, who in turn contacted the director dr. R. Groping. The decision
. From this meeting was' decided to have another approach to give more information on the disease and any proposals that we subsequently defined. That is likely to find a path for a place in the Piedmont Region will discuss' on 'any recognition, but also identify those involved in this project, which will consult' all together. I must say that among the political parties there is bad 'was immediately beneficial to our common purpose and domande.Certo' to be defined but together we can give a small signal. We await news.
other news, and 'that same evening I had a meeting with the federation Piedmont RD: Thanks to their generosity 'I have as it were adopted. I was able to attend the debate, which 'was focused on the technical panel that will take' place on 26/02/2011 in the region. I was lucky and honored to be the rapporteur on diseases not recognized in Piedmont, as well as submit a project together with some groups had already conceived and 'presented in September at the Higher Institute of Health'.
first problem to discuss. Certainly portero 'all the information you need to make sure that they speak of our diseases with guidelines and protocols for diagnosis, is to create a center for the sick in hospitals equipped with diagnosis and treatment with ticket asl, the parapharmaceuticals fall as a category lifesaving orphan drugs. One idea
. Listening to the various items you could create a bissness playning where each region can then 'draw on to create a single protocol, of course, approved by all the reality' of patients. My discussion of a key date where there is a basis in which patients and medical associations are free to draw as the United States. I already have 'open contact with other realities' of rare diseases that are available to help.
A gazebo for the dissemination . Finally, the day 28/02/2011 European Day of rare diseases activate gazebo (if you give us permission) at the Teatro Regio in turin for distributing leaflets on all the diseases recognized or not.
photos. Click here to see some photos of the event
Edited by Robert Moss, president-founder mcs-illness association Torino
Abstract . After assembling the material for the event, thanks to the help of Anna's husband Alberto Amedeo, resp. of the event, the same, I announced that we had a meeting with the secretary in charge of the office communications David Bullen, with his press secretary and the presence of investigative journalist Vera.
The encounter with the ' department. We were allowed to be present, with 10 people. Each of us has explained very carefully and in detail the problems of disease from the point of medically and socially. The Secretary took note of our concerns. Then through my own personal knowledge we have is that the Secretary met a Regional Councillor, Dr Luigi Cursio, who in turn contacted the director dr. R. Groping. The decision
. From this meeting was' decided to have another approach to give more information on the disease and any proposals that we subsequently defined. That is likely to find a path for a place in the Piedmont Region will discuss' on 'any recognition, but also identify those involved in this project, which will consult' all together. I must say that among the political parties there is bad 'was immediately beneficial to our common purpose and domande.Certo' to be defined but together we can give a small signal. We await news.
other news, and 'that same evening I had a meeting with the federation Piedmont RD: Thanks to their generosity 'I have as it were adopted. I was able to attend the debate, which 'was focused on the technical panel that will take' place on 26/02/2011 in the region. I was lucky and honored to be the rapporteur on diseases not recognized in Piedmont, as well as submit a project together with some groups had already conceived and 'presented in September at the Higher Institute of Health'.
first problem to discuss. Certainly portero 'all the information you need to make sure that they speak of our diseases with guidelines and protocols for diagnosis, is to create a center for the sick in hospitals equipped with diagnosis and treatment with ticket asl, the parapharmaceuticals fall as a category lifesaving orphan drugs. One idea
. Listening to the various items you could create a bissness playning where each region can then 'draw on to create a single protocol, of course, approved by all the reality' of patients. My discussion of a key date where there is a basis in which patients and medical associations are free to draw as the United States. I already have 'open contact with other realities' of rare diseases that are available to help.
A gazebo for the dissemination . Finally, the day 28/02/2011 European Day of rare diseases activate gazebo (if you give us permission) at the Teatro Regio in turin for distributing leaflets on all the diseases recognized or not.
photos. Click here to see some photos of the event
Edited by Robert Moss, president-founder mcs-illness association Torino
0 comments:
Post a Comment