It is easy to feel alone after being diagnosed with a rare disease.
You are surrounded by others that can only empathize so much with what you are going through, and the people like you are few and far between.
Eurodis, the patient-driven voice of rare disease patients in Europe, recognized this problem and saw the need to create a safe platform where rare disease patients, their families, and the organizations that support them can come together worldwide.
So, Eurodis created the initiative, RareConnect.
RareConnect brings together people and organizations across nations and languages who are united to each other by the very disease that isolates them from many others.
Through this unique online forum, every member who is connected to a rare disease can create or join a community, communicate, and share experiences and information, either disease-specific or concerning issues that touch on many disease areas. Many features are included in this forum to help in this process and enhance the patient’s experience on the website, such as storytelling, networking, webinars, discussion groups, and polls.
Furthermore, each rare disease-specific community is patient-led, but supported by full-time community managers who promote it and support the volunteer contributors from the group, and with free translations available to participants, RareConnect truly fosters worldwide relationships and support systems in a way that no other platform does.
In a mere 30 seconds, you can join a RareConnect community of others just like you. Click here to be taken to the website and begin feeling connected.
