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Deres kongelige højhed,

kronprinsesse Mary Elizabeth

Amalienborg Slotsplads 8

Postboks 2143

DK-1015 København K, Danmark.

Deres kongelige højhed.

Fordi De er protektor for to danske foreninger af mennesker, som lider på grund af defekter i nervesystemet, protektor for WHO/Europa, samt på grund af Deres stærke position i Norden og i global sammenhæng, skriver jeg dette brev til Dem. Jeg vil tillade mig at spørge, om De vil være så elskværdig at gøre Deres indflydelse gældende over for Nordisk Ministerråd, så det kan føre til, at Ministerrådet eller de nordiske lande iværksætter en analyse af databanker om neurologi i Norden og en samkørsel af informationerne i dem. Dermed ville de nordiske lande tage initiativ til at opfølge De Forenede Nationers og lederne af verdens nationers erklæring om nervesystemet i en traktat om nye verdensmålsætninger og således blive et eksempel for andre nationer om at gøre det samme. Verden har virkelig brug for en stærk ambassadør for nervesystemet. Hvis en så højtstående person som Deres kongelige højhed har mulighed for at gøre sin indflydelse gældende for nervesystemet, kunne det føre til store fremskridt for neurologien, som ville være til gode for hele menneskeheden i al fremtid. Jeg vil blot minde om de store resultater, som blev opnået, da prinsesse Diana af Wales gjorde sin indflydelse gældende for at få indført et forbud mod brug af landminer.

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Dear Mr Høybråten,

I refer to the letter sent to you by the Prime Minister of Iceland, dated 5 June 2015, which mentions, among other things, the Icelandic Government’s efforts to raise awareness of nervous systemillnesses and spinal cord injuries – one of Iceland’s priorities in the preparation of the United Nation’s Sustainable Development Goals.


Now that new Sustainable Development Goals have been adopted, I would take this opportunity to draw your attention to a stipulation in the UN’s political declaration for sustainable development (Transforming our World: the 2030 Agenda for Sustainable Development, paragraph 26), which obligates UN Member States to work to prevent and treat neurological disorders. I propose that the Nordic Council of Ministers initiate an analysis of the Nordic neurological research data bank and coordination of the data therein using the latest computer technology, with the aim of identifying common patterns in the research results that could help researchers achieve a better understanding of the workings of the nervous system. 

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Reply from the Secretary General of the Nordic Council of Ministers.

Reply from the Secretary General of the Nordic Council of Ministers.

9.11.2016

Dear Lilja Alfreðsdóttir,

Thank you very much for your letter dated 15 September 2016.

As part of our Nordic cooperation, we have been very aware of the need to focus on spinal cord injuries for a number of years, not least thanks to the excellent efforts by Iceland in this field.

Having received the letter from the Prime Minister of Iceland dated 5 June 2015, and in light of the subsequent proposal by the Icelandic Minister for Health, my office made sure that the matter was given its own item on the agenda for the meeting of the Nordic Council of Ministers for Health and Social Affairs.

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His Excellency Mr Ban Ki-moon
United Nations Secretary-General 
UN Headquarters
1st Avenue at 46th Street 
New York, NY 10017 
USA 
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it. 

Your Excellency,


I would like to begin by thanking you for coming to Iceland last October. It means a great deal to a small nation that wishes to make a difference internationally that persons such as yourself visit the country and support its projects. I would particularly like to thank you for the goodwill you have shown the Icelandic nervous system project that Lilja Alfreðsdóttir, Minister for Foreign Affairs, discussed with you on your visit. As she stated, the Icelandic authorities and Icelandic associations of people with nervous system illnesses and injuries have in recent years been lobbying for a campaign to be launched to gain a better understanding of how the nervous system works. The efforts have for the most part been spent in the Nordic countries. In addition, a request was sent to the UN in 2014 to make the increased understanding of the function of the nervous system an independent development goal. As you are aware, this did not come to pass. Instead, the UN strategy statement to 2030 included the goal that treatment of long-term illnesses, such as those involving the nervous system, be improved. I thank you and Ms Amina J Mohammad for your involvement in this achievement. 


Attached is a letter that the Minister for Foreign Affairs sent to Dagfinn Hoybraten, Secretary-General of the Nordic Council of Ministers, and his response. I respectfully request that you read the letters. As you will see, the Minister requests the Secretary-General ensure that the Council of Ministers adopt the provision on the nervous system contained in the UN strategy statement and have the Nordic neuroscience databanks analysed and the information synchronised using the latest computer technology. The goal is to look for common patterns in the research already carried out which could lead to the field of neurology gaining increased knowledge of the system’s workings. The 
Secretary-General’s response to the Minister’s letter is very positive.


As you are aware, it has been very difficult to improve the treatment of nervous system injuries, mainly because medical science does not fully understand its workings. In order to make it possible to improve treatment, we who have been working on the progress of this issue here in Iceland believe that it is vital to investigate the existing international knowledge of this subject and ensure that such information is pooled. As the Nordic countries work closely together and are well known within the medical field for particularly detailed records, we believe that it is appropriate to begin the database analysis there. There is growing understanding within the Nordic Council of the necessity of 
launching a campaign for the increased understanding of how the nervous system works. In addition to the letter from the Minister for Foreign Affairs, members of the Nordic Council have submitted a proposal to the same effect http://www.norden.org/da/nordisk-raad/sager-og-dokumenter/a-1683-velfaerd/. In order to increase the likelihood of success for this important issue now before the Nordic Council and which could lead other nations to follow, I would like to ask you to please contact the Secretary-General of the Nordic Council of Ministers and declare your support for the project.

Mr Ban Ki-moon
With increased understanding of the nervous system, understanding of genetics and general medicine would increase. Treatment would improve and the number of disabled people in the world would slowly decrease. A statement of support from you could make all the difference.
In closing, my wheelchair-bound daughter and I tender our heartfelt thanks for your farewell handshake after your lecture at the University of Iceland. We were extremely honoured.

Respectfully,
Audur Gudjonsdottir (sign)
Chairman of the Institute of Spinal Cord Injury of Iceland
Mobile: +354 897 4925
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

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