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Welcome to the Nordic Database for Rare Diseases (version2) —

Welcome to the Nordic Database for Rare Diseases (version2). Helsinki København Oslo Oulu Stockholm Århus. Nordic raredis meeting May 28 2013, Copenhagen. The Nordic database for rare diseases has been developed in Denmark in accordance to the recommendation in the Danish report of rare diseases from 2001 and recommendations from a Nordic working group on cranio-facial diseases. Extended discharge information added to patient forms, and also search forms updated with search for discharge reason. Raredis ...

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Welcome to the Nordic Database for Rare Diseases (version2) — | raredis.eu Reviews

https://raredis.eu

Welcome to the Nordic Database for Rare Diseases (version2). Helsinki København Oslo Oulu Stockholm Århus. Nordic raredis meeting May 28 2013, Copenhagen. The Nordic database for rare diseases has been developed in Denmark in accordance to the recommendation in the Danish report of rare diseases from 2001 and recommendations from a Nordic working group on cranio-facial diseases. Extended discharge information added to patient forms, and also search forms updated with search for discharge reason. Raredis ...

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raredis.eu raredis.eu
1

Ongoing Research Projects —

https://raredis.eu/forskningsprojekter

One of the main purposes of the Nordic database is to initiate and promote Nordic research projects and common treatment strategies. The following Raredis projects runs at the moment. Craniofacial, Scaphocephaly project. Status: Statistical processing started, preliminary results presented in raredis meeting May 2013. Neurofibromatosis project, NF1. Bisfosphonates in Osteogenesis Imperfecta. Status: First patients included using paperbased forms. Web-based Registration forms under implementation.

2

Information —

https://raredis.eu/information

FAQ (Frequently Asked Questions). FAQ (Frequently Asked Questions). RAREDIS Contact Information -. What is the language used? FAQ (Frequently Asked Questions). What is the language used? How is the database financed? FAQ (Frequently Asked Questions). How is the database financed? What technology does RAREDIS utilize? FAQ (Frequently Asked Questions). What technology does RAREDIS utilize? Nordisk databasesamarbejde. Powered by Plone.

3

raredis —

https://raredis.eu/mail_password_form

For at beskytte din adgangskode bedst muligt gemmer vi den i et kodet format og sender den ikke pr. email. Hvis du har glemt din adgangskode, bliver du derfor nà dt til at finde pà en ny. Udfyld formularen nedenfor, og systemet sender en email til den adresse, du opgav, da du registererede dig som bruger. Hvis dette ikke fungerer (hvis du f.eks. har glemt dit brugernavn eller du har à ndret e-mailadresse), sà kontakt administrationen. Nordisk databasesamarbejde. Powered by Plone.

4

Publications —

https://raredis.eu/formidling

Scientific Articles, Media, Meetings and Abstracts. The RAREDIS 2009 year report (available in Danish only). RAREDIS presentation Rome March 2014. Nordisk databasesamarbejde. Powered by Plone.

5

Patient Associations —

https://raredis.eu/patientforeninger

Nordisk databasesamarbejde. Powered by Plone.

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LINKS TO THIS WEBSITE

edsnorge.blogspot.com edsnorge.blogspot.com

EDS Norge: Nordisk database

http://edsnorge.blogspot.com/2010/09/nordisk-database.html

Dette er en blogg om Ehlers-Danlos Syndrom. Bloggen er av og for EDS'ere, pasienter, pårørende og andre som møter EDS-pasienter i sin hverdag. Er en felles Nordisk database finansiert av blant andre Nordisk Ministerråd og Helsedirektoratet. Her registreres pasienter med sjeldne diagnoser, for blant annet å forenkle tallmateriell og for videre forskning. Fra henholdsvis Kompetansesentre for sjeldne diagnoser i Danmark. Og Nordisk database for sjeldne sykdommer. Det finnes to Sentre for sjeldne diagnoser.

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Welcome to the Nordic Database for Rare Diseases (version2) —

Welcome to the Nordic Database for Rare Diseases (version2). Helsinki København Oslo Oulu Stockholm Århus. Nordic raredis meeting May 28 2013, Copenhagen. The Nordic database for rare diseases has been developed in Denmark in accordance to the recommendation in the Danish report of rare diseases from 2001 and recommendations from a Nordic working group on cranio-facial diseases. Extended discharge information added to patient forms, and also search forms updated with search for discharge reason. Raredis ...

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難病研究資源バンク(難病バンク)

難病の治療法や診断法などの研究をサポートするため、国立研究開発法人医薬基盤 健康 栄養研究所は難病研究資源バンク 難病バンク 事業を行っています。 国立研究開発法人医薬基盤 健康 栄養研究所 創薬資源部 難病資源研究室 難病研究資源バンク. 567-0085 大阪府茨木市彩都あさぎ7-6-8 TEL/FAX: 072-641-9016 E-MAIL: raredis-office@nibiohn.go.jp.

raredis.nibiohn.go.jp raredis.nibiohn.go.jp

難病研究資源バンク(難病バンク)

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