Rare Disease Day 2021

Rare Disease Day began in 2008 as an international campaign to raise awareness for people living with a rare disease. Rare Disease Day takes place on the last day of February each year with 100s of events held in +100 participating countries!

ERN BOND members are participating at the Rare Disease Day 2021 with some initiatives.

Programme will be shared and made available for consultation in this page. So, stay updated!

RARE 2030 – Foresight in Rare Disease Policy

Rebecca Skarberg, OIFE‘s representative in ERN BOND, has been invited as a keynote speakers at the important Policy Conference on Rare2030 taking place online on February 23rd, from 13.30 CET.   

The future of rare diseases starts today – Recommendations from the Rare 2030 Foresight Study

This event will be the culmination of our two-year study and we will present our recommendations for a new policy framework for Rare Diseases in Europe! 

The Rare 2030 Final Event marks the end of this two-year foresight study and will be the occasion to present the Rare 2030 policy recommendations for a new policy framework in presence of high-level speakers, such as Member of Parliament Frédérique Ries, or European Commissioner for Health and Food Safety Stella Kyriakides to name just a few.

Webinars on rare bone diseases and COVID-19

ERN BOND organises, in collaboration with Italian Patient Associations, a series of webinars about COVID-19 and rare bone diseases. 

Four webinars will be held from January 21st to March 4th at 7 pm CET. 

Online workshop on “Good practices within ERNs”

ERN ReCONNET, MetabERN and ERN BOND (the three Italian-led ERNs) co-organised a joint workshop online entitled: “Buone pratiche nelle Reti di Riferimento Europe“, online workshop on “Good practices within ERNs”

At the workshop many experts in the field of rare diseases are participating: Annalisa Scopinaro, president of Uniamo FIMR Onlus (Federation of Associations of People with Rare Diseases), Isabella Brambilla, member of the Executive Committee of ePAG Italia (the Group that gathers the representatives of Italian patients involved in ERNs), Domenica Taruscio, director of the National Center for Rare Diseases and member of the Board of Member States of the European Commission, as well as representatives of Italian patients and clinicians involved in 18 ERNs.

The event, held in Italian, takes place on February 15th at 2 pm CET. 

It is available on YouTube at: youtube.com/ERN_ReCONNET