European Meeting for Rare Diseases HelpLine

On 08.06.2012, the National Alliance for Rare Diseases was invited to attend the European HelpLine held in Paris within/by Eurordis alliance. This meeting was attended by members of the European Network Help-Line: France, Italy, Croatia (new member), Spain, Portugal, Romania, and Belgium.
Among the topics addressed at this meeting we can mention:
Establishing a European-wide single toll-free number for information related to rare diseases which will improve communication between existing HelpLine lines, will increase the visibility of the HelpLine service and therefore will improve the awareness of patients.
Conducting a detailed analysis of the results of the Caller Profiler Analysis November 2011. In this context, data was compared and useful information was changed between members of the European helplines.
Another topic discussed was the inclusion of HelpLine lines in the "Patient and Pharmaco-vigilant" project, which aims to increase public confidence on pharmaceutical regulatory system, increased transparency, access to information and also reduce mistrust on patients medical treatments.
Other topics discussed were the social networks for patients with rare diseases, specialized social services and integration of people with rare diseases in social policies.
Conclusions of the meeting:
All members agreed on the need for establishing a European-wide single toll-free number - 116. In this sense a letter will be sent on the behalf of the European Network for Rare Diseases HelpLine to the European Commission to reserve this number. If the request is accepted, each HelpLine Center will have 2 years to ensure all due diligence is made for the number to be functional.
All members have expressed their interest to participate in the project "Patient and Pharmaco-vigilant".
At the end of the meeting, it was decided that due to the projects in which the HelpLine European centers will get involved, another meeting will be required later this year.

 

Cuibuș Paula, psiholog APWR
Data: 
Friday, June 8, 2012