• geolocation
    July 29, 2016

    How to get more impact from your Faceboo...

    One of the most interesting functionalities Facebook has to offer is the possibility to geolocalise your posts. As you already know, RareConnect is av...
  • tweet
    June 14, 2016

    RareConnect webinar: How to start a Twit...

      Download the slides Descarga la presentación en ESPAÑOL. SPEAKERS: Rob Pleticha (@robpleticha), Online Community Manager RareConnect & ...
  • twitter hashtags image
    March 24, 2016

    List of #RareDisease Hashtags

    Hashtags make it easy to follow a conversation and unite a community around a particular rare disease, or just the #RareDisease topic in general. Here...
  • ignasi_2
    November 18, 2015

    Our experience with a crowdfunding campa...

    Earlier this year, the RareConnect team actively participated in a crowdfunding campaign led by the Spanish Association of Ectodermal Dysplasia and a ...
  • computer man
    December 6, 2013

    Have a presence on Google+

    by Robert Pleticha Here are two free Google services we are using, and why you should use them too.   Another social network? I’m trying to...
bigbox-28june2017

Redes sociales para pacientes e investigadores

El pasado mes de Junio 2017 nos invitaron a hablar de redes sociales y RareConnect en la 1a Escuela de Verano de organizada conjuntamente por EURORDIS y FEDER. El enorme…

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How do I set up a patient organisation for my rare disease?

Many people that visit RareConnect are interested in starting a formal rare disease patient organization to advocate for their disease and meet other people. We fully support that idea and…

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21 ways to participate in International Rare Disease Day 2017

Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others…

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Rare Diseases and Gene Therapy Webinar

Gene therapy and rare diseases webinar with Dr. Kshitiz Singh from the Precision Medicine lab at Georgia Tech in Atlanta. Webinar agenda: · Key terms in Genetics & Gene Therapy ·…

geolocation

How to get more impact from your Facebook publications: geolocation

One of the most interesting functionalities Facebook has to offer is the possibility to geolocalise your posts. As you already know, RareConnect is available in 8 languages. Analysing our Facebook…

tweet

RareConnect webinar: How to start a Twitter account for your rare disease

  Download the slides Descarga la presentación en ESPAÑOL. SPEAKERS: Rob Pleticha (@robpleticha), Online Community Manager RareConnect & Emma Rooney (@blumencasey), Gaucher disease patient advocate Why start a Twitter account? How can I…

RareConnect summary 2016 EMM_final

RareConnect Satellite Meeting during EURORDIS Membership Meeting #ECRD2016

During the EURORDIS Membership meeting 2016 in Edinburgh, Scotland the RareConnect team presented progress on the platform along with highlighting how rare disease patient groups can take part in the…

webinar

RareConnect webinar: How to start an awareness day for your rare disease

RareConnect has been collecting the dates of different global and national awareness days for different rare diseases in this blog post.  Many patient groups ask us how to start an awareness…

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How to create a profile for a rare disease community on RareConnect

See our list of current communities on RareConnect here: https://www.rareconnect.org/en/communities We work in partnership with rare disease patient associations to create those communities and offer community management support, human translation and…

twitter hashtags image

List of #RareDisease Hashtags

Hashtags make it easy to follow a conversation and unite a community around a particular rare disease, or just the #RareDisease topic in general. Here is a list of just…