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Fw: Rare Disease Patient Groups in Research: their role and priorities for the future

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    ... From: melissa@gig.org.uk To: toni.abram1@btopenworld.com Sent: Monday, 2 November, 2009 14:30:18 Subject: Rare Disease Patient
    Message 1 of 1 , Nov 6, 2009
      ----- Forwarded Message ----
      From: "melissa@..." <melissa@...>
      To: toni.abram1@...
      Sent: Monday, 2 November, 2009 14:30:18
      Subject: Rare Disease Patient Groups in Research: their role and priorities for the future







      Dear GIG Members,

      We have been contacted by Eurordis, the european patient organisation for rare diseases, and coordinators of Rare Disease Day to pass on information of a short survey they are undertaking regarding rare diseases and research.  The results of this survey will be announced on Rare Disease Day 2010. To follow the link to the survey click on the link to the left of this box of text, or below in the text from Eurordis.

      If you, and your members would be interested and able to to complete the survey we would very grateful.


      Best wishes,


      Melissa Hillier
      Genetic Interest Group

      Dear Patient Representative,

      As part of our efforts to advocate for more and better rare disease research, EURORDIS is conducting an on-line survey amongst patient organisations in order to find out which are the research areas that should be given priority from the patient’s perspective. We are also interested in finding out in what ways patients have collaborated with researchers and to what extent this collaboration was positive or negative.

      Please fill in the questionnaire, even if your organisation does not fund research presently. Each answer is important! You have until November 22 to respond to this survey.

      To fill out the questionnaire click here. (If you have difficulty clicking the link, copy this link https://www.surveymonkey.com/s.aspx?sm=g_2bF_2bx4d3x4rxh1pg9CcvXQ_3d_3d and paste it into your internet browser.)

      The messages that come out of this survey will help to acknowledge the role of patient organisations in research. Your answers will contribute to shaping a future research agenda of the European Union that takes into account the patients’ perspective. The results will also help national patient alliances carry your voice and advocate for more and better research for rare diseases at the national level.

      The contact details of your organisation will be kept confidential and the results of this survey will be returned to those of you who participated. We are convinced they will be also useful to you in your efforts to increase interest and funding for rare disease research from relevant authorities. In order to obtain the maximum advocacy impact, the main messages coming out of this survey will be extensively publicised on the occasion of Rare Disease Day 2010.

      Speak-up in order to be heard!!

      Thank you in advance for your valuable contribution


      Anja Helm Manager of relations with Patient Organisations
      Plateforme Maladies Rares
      102, Rue Didot,
      75014 Paris
      Tel: +33 1 56 53 52 17 (direct)
      Fax: +33 1 56 53 52 15


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