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ZIUA PACIENTILOR CU MIELOM MULTIPLU DIN ROMANIA

Data: Septembrie 30, 2011

 

---------------------------- Original Message ----------------------------

Subject: Feedback Timisoara Meeting

From: "Aerts Erik"

Date: Sun, October 2, 2011 4:44 pm

To: Viorica Cursaru

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Dear Viorica, I hope you had a save trip back to Vienna! I herewith want to thank you for your hospitality and inviting me to Tmisoara.

It was my great pleasure to meeting you and I look forward working on other educational events with you.

I highly appriciate your work and efforts you are doing for the patients, their families, nurses and other allied health care professionals.

With my best wishes,

Erik

 

ZIUA PACIENTILOR CU MIELOM MULTIPLU DIN ROMANIA

 

Data: Septembrie 11, 2010

Prezentari ce pot fi downloadate!

  • Prezentare Mark Krueger , Presedinte MPH
  • Prezentare Dr. Eric Aerts - Univ. Zurich
  • Prezentare Univ. Prof. Dr. N. Kroeger - Clinica de Hematologie din Hamburg, Germania
  • Prezentare Dr. Ovidiu Hariton Brand Manager Novartis Oncology
  • Prezentare Dl. Roman Szaduga Presedinte Myeloma Euronet Polonia
  • Prezentare Dr. Lector Universitar Horia Bumbea Spitalul de Urgenta Universitar
  • Prezentare Conf. Dr. Daniel Coriu
  •  


    Dear Viorica Cursaru,
    you are almost welcome; I liked it very much beeing with you and the
    Romanian patients. It was a good start and I wish you much success...
    Best wishes
    Nicolaus Kr�ger
    Universit�tsklinikum Hamburg-Eppendorf
    K�rperschaft des �ffentlichen Rechts
    Gerichtsstand: Hamburg

    ------------------------------------------------------------------------------------------------------------------


    London
    17:50

    Hi, Viorica.

    You should feel very proud of the success of your meeting. Like all the
    other speakers, I know that you and your colleagues worked very hard
    create a meaningful experience for Romanian patients and their families.
    The information provided can now be interpreted in a meaningful fashion by
    their doctors.

    I hope that you will feel free to let me know if there are other ways in
    which I might be of assistance.

    All best,

    Mark Krueger, MPH
    President
    Mark Krueger & Associates, Inc.
    New York, USA

     

    ------------------------------------------------------------------------------------------------------------------



    Dear Viorica,

    as requested I am sending you the receipts for the travel costs.

    Also I would like to thank you for the possibility to be in Bucharest.
    Both Roman and me hope that everything turned as you planned. We hope that
    this is the first of many meetings.

    Best wishes,
    Rafa�

    Rafa� �Zebrowski
    Polish Myeloma Patient Help Association

    --------------------------------------------------------------------------------------------------------------------



    Dear Viorica,

    Many thanks for this and it was really a pleasure to meet you and your
    colleagues in Bucharest.

    Could you send me some of the pictures your assistant made, I would like
    to write a short .article. in the EBMT Nurses Group Newsletter.

    I am looking forward to work with you and the colleagues, working in the
    field of haematology and stem cell transplantation in Romania.

    All the best,
    Erik Aerts
    Past President
    EBMT Nurses Group

    ---------------------------------------------------------------------------------------------------------------------



    Dear Viorica
    Dear Horia
    I herewith want to thank you for your hospitality at the meeting held on
    the 9th of September in Bucharest!
    On the 12th of September I discussed with my colleagues of the EBMT Nurses
    Group Board the proposal to organize a study day for nurses and other
    health care professionals in Bucharest, Romania which is received well and
    officially now is agreed to proceed with the next steps.
    Please could somebody of you give me the contact details of the colleagues
    from Novartis in Romania so that we can sure if they are willing to
    sponsor this event?
    The next step will be to find at date on a Friday, probably in May, June
    or October 2011.
    Please let me know your thoughts about my suggestions and I am looking
    forward to discuss the next steps with you.
    With my best wishes from Z�rich,
    Erik Aerts
    Past President
    EBMT Nurses Group

    ------------------------------------------------------------------------------------------------------------------------



    Buna seara,

    Va multumesc mult pentru ceea ce ati facut si faceti pentru Asoctiatia de
    suflet pentru pacientii cu mielom din Rom/ania.

    Sper sa fie un pas mare catre imbunatatirile pe care le dorim si le asteptam
    atat noi medicii cat si pacientii.

    Cu stima,

    Horia Bumbea

     

     

     

     

     

  • Click aici pentru a downloada filmul Conferintei!
  •  

    Stimate Domnule Ministru,
    In numele Organizatiei Myeloma Euronet Romania, legal inregistrata in anul 2007, va rog sa binevoiti a dispune includerea in programul oncologic a doua medicamente vitale pentru pacientii care sufera de mielom multiplu si anume, Talidomida si Revlimid. Doresc sa va mentionez ca aceste medicamente sunt utilizate in toate tarile Uniunii Europene in tratamentul mielomului multiplu, ambele facand parte din protocolul therapeutic. In Polonia cele doua medicamente au fost incluse in programul oncologic inca de acum 4 ani iar in Croatia, tara care a aderat la Uniunea European la 6 ani dupa aderarea Romaniei, a inclus anul acesta medicamentul Revlimid in programul oncologic. Stiu ca sunteti mult mai bine documentat decat sunt eu atat in ceea ce priveste statisticile si rata mortalitatii in randul pacientilor cu mielom multiplu din Romania cat si a duratei de viata a acestora. Din propria-mi experienta - sotul meu a murit la 30 de luni de la diagnosticare - va pot spune ca media de viata a pacientilor cu mielom multiplu din Romania arareori depaseste 5 ani - lucru care se datoreaza in mare parte profesionalismului medicilor romani care, cu putinele resurse pe care le au la dispozitie, reusesc sa aduca acestor pacienti un confort relativ. Avand in vedere cele de mai sus, precum si recomandarile Comisiei Europene privind armonizarea sistemului de sanatate in Europa, va rog Domnule Ministru sa cereti autoritatilor competente includerea Talidomidei si a Revlimidului in programul oncologic.
     
    Cu deosebita consideratie
    Viorica Cursaru
    Presedinte Myeloma Euronet
    Membra a Consiliului Director al Myeloma Patients Europe
     

    MYELOMA EURONET ROMANIA

    WEBSITE INFORMATII MIELOM MULTIPLU

     

    Program Home Care Novartis

     
       MER                                                                                        Novartis Pharma                                                 
    In ziua de 31 Martie 2011, la initiativa Companiei NOVARTIS si cu sustinerea Organizatiei Mieloma Euronet Romania,a fost lansat, pentru prima data in Romania, programul HOME CARE. La lansarea programului au participat aproximativ 50 de cadre medicale din Bucuresti si din tara, printre acestia numarandu-se si Dr. Horia Bumbea, Sectia de Hematologie a Spitalului Universitar din Bucuresti.  Acest program , care se deruleaza in multe state membre ale Uniunii Europene, se adreseaza tuturor pacientilor, inclusiv celor diagnosticati cu mielom multiplu, carora li se administreaza, la indicatia medicului curant, tratament injectabil cu Zometa.In cadrul acestui program, pacientii vor beneficia , la domiciliu, o data pe luna, sub supravegherea unui personal medical calificat, de un tratament gratuit cu Zometa si/sau orice alte medicamente prescrise de medicul curant al pacientului. Mai mult, datorita efectelor secundare pe care le pot avea pacientii in decursul bolii, acestia vor beneficia de asemenea, de un consult stomatologic gratuit.