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…

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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…


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…


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…

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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…


Crowdfunding and rare diseases: an expanding phenomenon

by Robert Pleticha We did a webinar about crowdfunding last year, and I attended the first ever UK Crowdfunding Day last November. Ever since, I’ve been thinking about how more rare disease patient groups…


RareConnect workshop during the EURORDIS Membership Meeting 2014

The RareConnect team was pleased to welcome over 60 patient group representatives to its workshop on Online Communities during the 2014 EURORDIS Membership Meeting in Berlin. To view the presentations, please click…


Rare disease patient groups using Orphanet effectively

Orphanet is the most important database in the European Union for rare diseases and orphan drugs for the general public.  It contains information about 6 000 diseases and is freely accessible….


5 ways to engage your online rare disease community

by Robert Pleticha People living with a rare disease have a lot in common. No matter the country, religion, or culture, everyone affected by a rare disease shares a strong…

Living with Wegner's

Never miss an article published about your rare disease

by Robert Pleticha As a rare disease patient advocate, it is important to stay up to date on recent scientific publications in your disease area. Whether your disease has new…