our pathology

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  giusi | published 10 days ago | Originally written in English our pathology

  I have been followed as a patient for two years at the San Raffaele in Milan. I would like to know clearly why in Italy our pathology that is known as "blood cancer" abroad is not recognised as a rare disease in Italy? if the Italian state would consider those who suffer from waldenstrom's as being patients with a rare disease, we would have more security at a national medical level...

  can anyone give me an answer to this?

  Thanks
  2 replies to the topic — see all replies

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    pmanning published 10 days ago | Originally written in English

    @giusi
    Thank you for your interesting post, although this is a difficult question for someone in England to answer, as I have no knowledge of the health system in Italy. However I can at this stage make some general points:
    1. Speak to your doctors about the matter and see what is being done in Italy to have the disease recognised and to ensure that patients in Italy can have access to the best possible modern treatments
    2. Try and make contact with other patients in Italy so that you can perhaps set up a patient support organisation to campaign for your interests as a group
    3. Contact and join the International Waldenstrom Macroglobulinemia Foundation (www.iwmf.com/) as this will give you regular access to the latest information and many other benefits. Ask the IWMF if they can advise you of who is most expert in Italy about this disease.
    I hope these thoughts are helpful. To make progress in research and treatment it is essential that patients are as active as possible in seeking for and sharing information. The WM community is very active and informed and that is a good thing!
    Do come back here to let us know how you are getting on and if there are matters that you think it would be helpful to share in this space.
    Best wishes,
    Phil
    --
    Phil Manning, English language moderator
  • 
    jvreyn published 10 days ago | Originally written in Italian

    Cara Guisi,
    l'obiettivo del progetto Europlan è di sviluppare entro il 2013 un piano nazionale per le malattie rare per tutti i paesi europei. Fino a oggi l'Italia non è il solo paese a dover fare ancora molto!
    Si può seguire l'attività e il progresso sull'internet: www.iss.it//cnmr, la rete del Centro nazionale malattie rare. Anche sulla rete della Federazione Italiana Malattie Rare: uniamo.org.
    Ci sono in Italia competenti specialiste per la nostra malattia che certamente non mancanno di aiutare quanda un trattamento è necessario.
    Per la malattia di Waldenström non è ancora una organizzazione di patienti. Ma c'è l'AMS, l'Associazione Malattie del Sangue, per la promozione della ricerca e per il progresso nel trattamento delle leucemie e delle altre malattie del sangue. Info: www.ams-onlus.org
    Vi auguro speranza, coraggio e fortezza.
    Joanna