• 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...
  • authr-crowd-funding
    September 26, 2013

    Crowdfunding for Rare Diseases

    by Robert Pleticha There has been an increase in crowdfunding projects and websites over the past year. It seems that crowdfunding (gather small amoun...
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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 ·…

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…

rdd-social-profile

21 ways to participate in International Rare Disease Day 2016

by Robert Pleticha 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…

ignasi_2

Our experience with a crowdfunding campaign

Earlier this year, the RareConnect team actively participated in a crowdfunding campaign led by the Spanish Association of Ectodermal Dysplasia and a father with two children affected by this rare…

social

2016 Rare Disease Awareness Campaigns Calendar

We took all the rare disease awareness campaigns that were sent in from around the world and created this calendar. If your date does not appear in the calendar, add it…

rseau sociaux

Rare Disease Awareness Days

This list of awareness days for different rare diseases has been gathered from EURORDIS members and RareConnect followers over the past few months. If we missed your date, please go…