Patients Online

Patients are often keen to establish contact to others who share their condition. Given their geographical spread, such interaction primarily takes place online.

RareConnect – a Multilingual Platform

The Advocacy encourages patients to communicate with each other via RareConnect, a non-profit platform for rare disease communities where patients, families, carers and patient organisations can interact, share advice and generally support each other.

Each community is moderated by a person representing the relevant advocacy group. The platform is managed by EURORDIS – Rare Diseases Europe and Care4Rare Canada whose team of community managers assist the moderators. All communication on the platform is encrypted.


You can also follow us on Facebook where we announce news of our symposia, online research forums and fundraising initiatives. Patients and their caregivers can contact us on our Facebook page anytime. We aim to get back to you within twenty-four hours.

NA News

In our newsletter, NA News, published several times a year, the entire NA community have the opportunity to tell their stories and convery their news. If you would like to be part of this, please send us your stories. There are no formulas for how to put your story together but if you would like inspiration, please look at our NA News back catalogue or contact us directly.