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Home  /  Forum  /  Pharming  /  Op naar 1 euro

Aandeel Pharming Group AEX:PHARM.NL, NL0010391025

Laatste koers (eur) Verschil Volume
0,719   -0,002   (-0,28%) Dagrange 0,717 - 0,735 2.410.948   Gem. (3M) 4,1M

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15.953 Posts
Pagina: «« 1 ... 316 317 318 319 320 ... 798 »» | Laatste | Omlaag ↓
  16. CW1884 26 november 2015 15:05
    Macedonia www.haemacedonia.mk

    Access to medication
    The first access to HAE medication happened in October
    2015 but with no clear regulation about how patients
    access it; named patient or needs basis. There are only
    two hospitals in Macedonia that treat HAE, one for
    children and one for adults. Ruconest and Berinert are
    available, with Berinert mostly being for children. The
    two hospitals are in Skopje, so patients have to travel
    there for treatment. There is currently a clinical trial for
    Ruconest and this helps with access at the moment.

    Working together I
    The countries near Macedonia have similar difficulties
    in not having access to medicines. HAE Macedonia has
    applied for a grant to have a regional meeting with
    patients as there is a physician in each of the countries,
    aware of patients and wanting to do something. In
    Albania and Slovenia as well as in Serbia, Montenegro,
    Croatia, and Kosovo there is great interest in doing a
    patient meeting.

    Working together II
    HAE Macedonia is working with the National Alliance of
    Rare Diseases to build its reputation and seek access to
    medications. Most patients can only access therapy via
    clinical trial, private donations or individual fundraising.

    Patient registry
    The hospitals and health regulatory body are positive
    towards a patient registry, but there will be challenges
    around how to collect substantial and accurate data.
    HAE Macedonia hope to build a list to give to the
    Minister of Health.

    Macedonia www.haemacedonia.mk

    Access to medication
    The first access to HAE medication happened in October
    2015 but with no clear regulation about how patients
    access it; named patient or needs basis. There are only
    two hospitals in Macedonia that treat HAE, one for
    children and one for adults. Ruconest and Berinert are
    available, with Berinert mostly being for children. The
    two hospitals are in Skopje, so patients have to travel
    there for treatment. There is currently a clinical trial for
    Ruconest and this helps with access at the moment.

    Working together I
    The countries near Macedonia have similar difficulties
    in not having access to medicines. HAE Macedonia has
    applied for a grant to have a regional meeting with
    patients as there is a physician in each of the countries,
    aware of patients and wanting to do something. In
    Albania and Slovenia as well as in Serbia, Montenegro,
    Croatia, and Kosovo there is great interest in doing a
    patient meeting.

    Working together II
    HAE Macedonia is working with the National Alliance of
    Rare Diseases to build its reputation and seek access to
    medications. Most patients can only access therapy via
    clinical trial, private donations or individual fundraising.

    Patient registry
    The hospitals and health regulatory body are positive
    towards a patient registry, but there will be challenges
    around how to collect substantial and accurate data.
    HAE Macedonia hope to build a list to give to the
    Minister of Health.
  17. CW1884 26 november 2015 15:07
    Colombia www.facebook.com/pages/
    Asociación-Colombiana-de-Angioedema-
    Hereditario/119669588091359

    One more South American country has been added to
    the HAEi world map as Colombia has joined the family.
    The HAE contact in Colombia is Jackeline Sus Moreno
    who can be contacted at:
    jacksus2@hotmail.com.
    If you want to take a closer look at the HAE organization
    in Colombia, please visit the national Facebook group at
    www.facebook.com/pages/Asociació...
    Angioedema-Hereditario/119669588091359.
  18. CW1884 26 november 2015 15:12
    From Milos Jesenak (Center for HAE in Martin, Slovakia
    ? www.unm.sk) and Katarina Hrubiskova (Center for
    HAE in Bratislava, Slovakia) HAEi has received this
    information:
    Slovakia is a country in eastern central Europe with a
    population of over 5 million people. The exact data about
    the prevalence of HAE are missing, however, effective
    therapies are available (human plasma derived C1-
    INH concentrate, recombinant rabbit C1-INH, icatibant).
    According to the general prevalence, there should be at
    least 100-300 patients with HAE in Slovakia. Recently,
    the national study about the number of HAE patients was
    performed through the questionnaire-based survey in
    Out-patient clinics for allergy and clinical immunology.
    Based on the recieved questionnaires, there are all
    together 87 living patients with HAE (aged 35.93 ys.;
    43% males) from 39 families. 15 patients already have
    died due to suffocation. The most prevalent form was
    HAE type I (87%). The diagnostic delay between the first
    symptoms and diagnosis estimation was 8.60 ys. In the
    majority of the patients (68%) a combination of various
    clinical symptoms (skin, gastrointestinal, laryngeal,
    genital) was observed. However, 17% patients suffered
    from isolated skin symptoms, 6% from gastrointestinal
    and 3% from laryngeal angioedemas. Five patients are
    still asymptomatic. Regarding the prophylaxis, 42% were
    without prophylactic treatment, 47% took attenuated
    androgens, 8% tranexamic acid, and 3% either pd-C1-
    INH or rh-C1-INH. Acute attacks were treated in 30%
    with danazol, in 26% with icatibant, in 22% with pd-
    C1-INH and in 22% with rh-C1-INH. The survey is still
    ongoing.
    The creation of a national HAE registry as well as a
    Slovak HAE patients’ organisation is planned.
  19. CW1884 26 november 2015 15:14
    Spain www.angioedema-aedaf.org

    Website
    The website of HAE Spain is currently being updated
    and it is expected to be the first one hosted under the
    HAEi umbrella.

    Medication
    Berinert, Cinryze, and Firazyr are available in Spain,
    while there is no price agreement for Ruconest.
    Stanozolol (attenuated androgen) is no longer being
    marketed in Spain.
  20. [verwijderd] 26 november 2015 15:14
    quote:

    leon 55 schreef op 26 november 2015 14:48:

    Het distributie contract wat PH heeft met het Colombiaanse Cytotech
    voor Colombia & Venezuela verwacht ik aanzienlijke verkopen Ruconest daar er veel patiënten met HAE zijn gediagnostiseerd.
    Het laatste Q4 zou wel eens zeer positief kunnen zijn.
    Aha, vandaar die stortvloed aan aanvragen voor leningen uit die landen. Als iemand nog wil sponsoren hoor ik het graag.
15.953 Posts
Pagina: «« 1 ... 316 317 318 319 320 ... 798 »» | Laatste |Omhoog ↑

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