• Social Media Profile Badge
    January 30, 2018

    21 ways to participate in International ...

    Patients as proactive actors in research Rare Disease Day 2018 (28 February) focuses on this year’s theme – research. This year’s video pays...
  • rd_featured
    January 26, 2018

    Basic notions to get the most out of Goo...

    We know, you were told not to google your disease but let’s be honest you did it and if you’re lucky you got tons of results and maybe it was...
  • Canned Responses
    November 13, 2017

    Use Gmail Canned responses to speed up r...

    A few days ago we discovered a Google Feature called “Canned Responses”. We found it perfectly handy when you need to send similar email ...
  • badges
    October 24, 2017

    RareConnect Badges

    How to promote your Community Continual and consistent promotion of your RareConnect community is critical to member participation. When promoting th...
  • achse_RDDjpg
    October 24, 2017

    How to advocate for Rare Diseases on soc...

    “We’re thrilled to introduce you to our first-ever collaboration on the blog! Anna Suarez is an advocate for patients, caregivers, and anyone...
Social Media Profile Badge

21 ways to participate in International Rare Disease Day 2018

Patients as proactive actors in research Rare Disease Day 2018 (28 February) focuses on this year’s theme – research. This year’s video pays tribute to the role patients play in…

rd_featured

Basic notions to get the most out of Google

We know, you were told not to google your disease but let’s be honest you did it and if you’re lucky you got tons of results and maybe it was…

Canned Responses

Use Gmail Canned responses to speed up replies

A few days ago we discovered a Google Feature called “Canned Responses”. We found it perfectly handy when you need to send similar email responses out to a number of people….

badges

RareConnect Badges

How to promote your Community Continual and consistent promotion of your RareConnect community is critical to member participation. When promoting this platform highlight the benefits of your community like human translation…

achse_RDDjpg

How to advocate for Rare Diseases on social media

“We’re thrilled to introduce you to our first-ever collaboration on the blog! Anna Suarez is an advocate for patients, caregivers, and anyone impacted by mesothelioma, which is a rare cancer that is diagnosed…

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Get the latest RareConnect updates

Once a month we send updates with the latest RareConnect news in English and Spanish. Do you want to start receiving them? Fill in the form below! We’d love to…

General Discussion

Plant a flag!

  When we were working on the new RareConnect re-design; we knew we wanted to have a big place where people could discuss general topics that are not specific 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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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 ·…