Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS - Haukeland University Hospital

All of the info is in Norwegian. While I have not seen an explicit requirement that you speak Norwegian in order to be able to participate, I strongly suspect that it is the case. And as Yann said, traveling when moderate/severe will affect the results.
 
Braganca said:
I wonder would they accept people who will relocate there for the first few months and the middle treatment month.
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From what they told me, you must be in the Norwegian Health Care system, hence the requirement to be a resident. I'm not sure how quickly one could enter that.
They did not tell me any language requirements, I don't think you have to be/speak Norwegian from that they told me.
 
rapidboson said:
From what they told me, you must be in the Norwegian Health Care system, hence the requirement to be a resident. I'm not sure how quickly one could enter that.
They did not tell me any language requirements, I don't think you have to be/speak Norwegian from that they told me.
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In Norway, you will normally automatically become a member of the Norwegian National Insurance Scheme when you live here and have tax links to the country. In order to become a member, you must normally plan to stay in Norway for at least 12 months.

You may lose your membership of the National Insurance Scheme if you leave Norway, even for a short period of time. It is important to familiarise yourself with the rules if you plan to stay abroad for any length of time.
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https://www.helsenorge.no/en/healthcare/Healthcare in Norway - Helsenorge
 
Jaybee00 said:
Can’t the Norwegian sovereign wealth fund be used to fund this? Seems like they want to keep increasing the amount of money in the fund, but don’t spend that much of it?


https://www.nbim.no/en/
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On average, the government is to spend only the equivalent of the real return on the fund, which is estimated to be around 3 percent per year. In this way, oil revenue is phased only gradually into the economy. At the same time, only the return on the fund is spent, and not the fund’s capital.
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And the fund isn’t used directly by anyone, it’s only used to supplement the national budget (about 20 % of the total budget).

So they would have to apply to the normal funding bodies for (medical) research.
 
Hutan said:
I wonder if it would be worth trying to change this. For example, individuals or ME/CFS organisations could write to the drug company asking them to support the study - pointing out the severity of ME/CFS and the large numbers of people affected.


There are a few organisations there that could be contacted.


So, Genmab is a Danish company.

I think Janssen Biotech is headquartered in Belgium.

I'm just thinking, the small amount of funds that most of us could donate would be easily outweighed by a substantial discount on the drug cost - and a few powerful letters to the right person perhaps could achieve that. I think we'd probably need some guidance from the Norwegian ME Association on what should be done (and what has already been tried).
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I think this is a very good point. Especially if some respected researchers signed the letter, that might give it some weight. But we would have to be careful about who drafts it. I'm having flashbacks to those 'fund BC007 phase 3 because it definitely works even though the phase 2 hasn't reported yet' type petitions that went around before last winter.
 
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