Please participate in this survey by RARE BAROMETER VOICES

[IAPG]

Ahead of Rare Disease Day, we have recently launched a new Rare Barometer Voices short survey (available in 23 languages) on the 2018 theme of research. The survey only takes around 5 minutes to complete! You can participate in two different ways by 26 October: 

1. Please spread the word about the survey throughout your network by sharing this link to the survey:ow.ly/jDu330eFt7B or the link to this press release. 
   
   The results for your country or disease will be made available to you upon request (please contact:rare.ba...@eurordis.org) to use when advocating for more rare disease research. 
   
   
2. You can also participate as a patient representative! By doing so, you will help us to identify priorities in the field of rare disease research: ow.ly/jDu330eFt7B.
   

Rare Barometer Voices is also now global - participants from all over the world can now participate in the survey and answer in one of the 23 languages available. 

We believe that the results from this survey can really make a difference in voicing the needs of people in the rare disease community in this area. 

Thank you for your participation!

[IAPG]

link: https://www.sphinxonline.com/SurveyServer/s/EURORDIS75/DataPS_ext_interface/questionnaire.htm

Dear Rare Barometer Voices,

Let us know your preferences!

It will take you a maximum of 20 minutes to answer.

There are an increasing number of initiatives that involve the sharing of health information, which focus on developing new treatments or helping patients to manage their conditions. We would like to hear from you on what information you would be keen to share, for which purpose and with what type of people or organisations, so that the organisers of new initiatives can be informed of your preferences.

Please note:

-Your contact details will be  kept in secure storage, only accessible to our research team.

-You will be informed about the results of the survey following your participation and we will also share these results with decision-makers in order to bring about change for the rare disease community.

Looking forward to hearing from you,

Kind regards,

The Rare Barometer Team.

On Thursday, September 28, 2017 at 7:08:44 PM UTC+5:30, IAPG wrote:

Ahead of Rare Disease Day, we have recently launched a new Rare Barometer Voices short survey (available in 23 languages) on the 2018 theme of research. The survey only takes around 5 minutes to complete! You can participate in two different ways by 26 October: 

1. Please spread the word about the survey throughout your network by sharing this link to the survey:ow.ly/jDu330eFt7B or the link to this press release. 
   
   

1. The results for your country or disease will be made available to you upon request (please contact:rare.barometer@eurordis.org) to use when advocating for more rare disease research. 
   
   

1. You can also participate as a patient representative! By doing so, you will help us to identify priorities in the field of rare disease research: ow.ly/jDu330eFt7B.