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….


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…


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…


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…


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…


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…


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 ·…


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…


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…