Thursday, 10/03/2011 we sent to all the Regions and the Minister for the joint letter registered letter with an attached CD with all the 6412 signatures.
We will keep you informed of any replies you receive.
Saturday, March 12, 2011
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SENT TO ALL THE REGIONS AND THE MINISTRY OF THE JOINT LETTER
Thursday, 10/03/2011 we sent to all the Regions and the Minister for the joint letter registered letter with an attached CD with all the 6412 signatures.
We will keep you informed of any replies you receive.
Thursday, 10/03/2011 we sent to all the Regions and the Minister for the joint letter registered letter with an attached CD with all the 6412 signatures.
We will keep you informed of any replies you receive.
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proof that you sent an individual report of their disease to the regions
to all associations / groups that want to send the alert to individual regions of their disease, we ask you to give us proof that you sent in writing dirittinonregaliperimalatirari @ gmail.com
to all associations / groups that want to send the alert to individual regions of their disease, we ask you to give us proof that you sent in writing dirittinonregaliperimalatirari @ gmail.com .
When you want to publish your report on this page oppure su facebook Diritti non Regali per i Malati Rari , potrebbe essere molto utile per tutti.
Grazie!
Wednesday, March 9, 2011
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SUPERNADO.IT - Become a permanent non-approved that initiative on Rare Diseases
"Nomadism diagnostic" absence of care at centers Reference that does not exist, lack of social protection / welfare at school or at work: in a word, thousands of people who undergo a total exclusion compared to those who have a rare, but recognized .
These - according to the promoters of the blog-rights Gifts for Sick Rare - the main consequences of the failure to include many in the National List of Rare Diseases identified ten years ago by ' Annex 1 of the Ministerial Decree 279/01 and these are also the reasons which had prompted a number of groups and associations, at the recent Day International Rare Disease of February 28 from applying directly to Regions , who are in - or at least those falling into situations of return of the budget - recognize individual more rare diseases, compared to those included in 'National List, as well as, moreover, has already been done, for example, in Piedmont, Tuscany and Emilia Romagna (Of this initiative is widely read in our website by clicking here ).
From these considerations, then, was the idea of \u200b\u200ba joint letter and be addressed to the regions, to request the inclusion in their lists of all rare diseases not yet recognized at the national level. And that letter was just sent on March 4 last regional governments and the various Regional Departments of Health, but also to the Ministry of Health, Institute of Health, the National Look for Rare Diseases and UNIAMO -FIMR (Italian Federation for Rare Diseases).
Significant results already achieved: in less than a month, in fact, in support of the document, arrived well 6400 signatures (as of March 6), what he did consider it appropriate to keep open the initiative, making it even Permanent . Anyone wishing to then report a new disease or just want to add your membership, you can still do it, by contacting the promoter blog ( dirittinonregaliperimalatirari@gmail.com ). (SB)
Diventa permanente quell'iniziativa sulle Malattie Rare non riconosciute
Si tratta della lettera inviata alle Regioni nell'ambito di una campagna per le Malattie Rare non riconosciute, promossa dal blog Diritti non Regali per i Malati Rari. Numerosi gruppi e associazioni, infatti, che si occupano di patologie non inserite nell'Elenco Nazionale delle Malattie Rare, hanno chiesto direttamente alle Regioni di farlo all'interno dei your list. And for the support 6,400 signatures have already arrived, what did think of making permanent the initiative, allowing anyone to report a new disease or simply to join
"Nomadism diagnostic" absence of care at centers Reference that does not exist, lack of social protection / welfare at school or at work: in a word, thousands of people who undergo a total exclusion compared to those who have a rare, but recognized . These - according to the promoters of the blog-rights Gifts for Sick Rare - the main consequences of the failure to include many in the National List of Rare Diseases identified ten years ago by ' Annex 1 of the Ministerial Decree 279/01 and these are also the reasons which had prompted a number of groups and associations, at the recent Day International Rare Disease of February 28 from applying directly to Regions , who are in - or at least those falling into situations of return of the budget - recognize individual more rare diseases, compared to those included in 'National List, as well as, moreover, has already been done, for example, in Piedmont, Tuscany and Emilia Romagna (Of this initiative is widely read in our website by clicking here ).
From these considerations, then, was the idea of \u200b\u200ba joint letter and be addressed to the regions, to request the inclusion in their lists of all rare diseases not yet recognized at the national level. And that letter was just sent on March 4 last regional governments and the various Regional Departments of Health, but also to the Ministry of Health, Institute of Health, the National Look for Rare Diseases and UNIAMO -FIMR (Italian Federation for Rare Diseases).
Significant results already achieved: in less than a month, in fact, in support of the document, arrived well 6400 signatures (as of March 6), what he did consider it appropriate to keep open the initiative, making it even Permanent . Anyone wishing to then report a new disease or just want to add your membership, you can still do it, by contacting the promoter blog ( dirittinonregaliperimalatirari@gmail.com ). (SB)
-rights Rare Gifts for the sick is a blog (accessible by clicking here ) which contribute many associations Sick of Rare . The 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, in a uniform manner throughout the country, mentioned in the document This text is available by clicking here to it and can adhere all associations and groups of rare diseases are not recognized by clicking here .
Last Updated (Tuesday, 8 March 2011 17:16)
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HEALTH 'HEALTH NEWS RARE - OVER 6400 SIGNATURES TO SUPPORT THE CAMPAIGN FOR THE RARE DISEASES DISALLOWED
| OLTRE 6400 FIRME A SOSTEGNO DELLA CAMPAGNA PER LE MALATTIE RARE NON RICONOSCIUTE |
| 07 March 2011 | |
| La Lettera alle Regioni per chiedere l’inserimento nei propri Elenchi Regionali di tutte le Malattie Rare ancora non riconosciute a livello nazionale, promossa da molti gruppi-associazioni di malattie rare aderenti alla Campagna per le Malattie Rare non riconosciute "Rights not rare gifts for the sick," was sent on March 4 last year to regional governments and regional departments of Health and the Ministry of Health. In less than a month have been collected over 6400 signatures in support of this initiative for the recognition and award of a Regional Code of Exemption for Rare Diseases not yet included in Annex 1 of Decree 279/01. Anyone wishing to report a new disease, or simply wish to add your membership, please write to: dirittinonregaliperimalatirari@gmail.com to view. The 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 is available by clicking on this link . |
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