News

Survey in Bulgaria

Bulgaria is the first country after Spain, where the recruitment has started. Bulgarian patients can access the questionnaires here.

BURQOL-RD Second Annual Meeting

The second annual meeting will take place in Brussels on May 22, 2012, one day before the 6th European Congress on Rare Diseases and Orphan products.

European Actions to improve the life of patients living with rare diseases

BURQOL-RD was presented at a media event dedicated to "European Actions to improve the life of patients living with rare diseases" in Louxembourg, 25-26 October 2011. Read more.

Survey in Spain

The survey in Spain was launched in the second half of July, 2011. Patients were contacted by their organisations or registries via e-mail. Questionnaires will be filled out on-line. Access the Spanish questionnaires here.

BURQOL-RD First Annual Meeting

The first annual meeting took place in Madrid, Spain, on May 23, 2011. The objectives of this meeting were to resume the work done in the first year and to outline the near future steps.

Eurordis Membership Meeting 2011 Amsterdam

The project’s objectives and milestones were presented in May, 2011 in the Eurordis Membership Meeting in Amsterdam.

5th Eastern European Conference of Rare Diseases and Orphan Drugs

On 5th July, 2010 BURQOL-RD was presented on the 5th Easthern European conference of RD and orphan drugs, which took place in San Petersburg, Russia.

BURQOL-RD presentation on Eurordis webpage

In September, 2010 Eurordis informed about the BURQOL-RD project on its webpage. Click here to see the article.

Target RD

In January 2011 a final set of RDs was determined, combining the Delphi prioritization of RDs and determinants in the Carroll diagram (the three determinants used were: existence of an effective therapy, prevalence and physical/mental impairment). This method yielded the final set of RDs to be targeted in the pilot study of BURQOL-RD:

• Cystic fibrosis

• Prader-Willi Syndrome

• Haemophilia

• Duchenne Muscular Dystrophy

• Epidermolysis Bullosa

• Fragile X Syndrome

• Scleroderma

• Mucopolysaccharidosis

• Juvenile idiopathic arthritis

• Histiocytosis

BURQOL-RD Kick-off Meeting

The first meeting of the project took place in Krakow, Poland, on May 15, 2010.

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