Edition of 11 December 2020

The International Rare disease Day 2021 will soon be here, with 79 days to go and the event is going digital in light of the current Covid-19 health crisis. EURORDIS, who organises the event in collaboration with National patient alliances will be holding a number of online events and digital campaigns to raise the voice of RD patients in Europe and over the world to celebrate Rare Disease Day. Two virtual events will be held in the framework of the International Day, the rare disease week, the EURORDIS Black Pearl Awards, the EURORDIS Photo Award during the Black Pearl Awards, and the presentation of the final recommendations of Rare 2030 Foresight study. 

Online registration to participate at the EURORDIS Black Pearl Awards, free of charge, will soon be open. People across Europe are called to express their support to RD patients during the 2021 edition of Rare Disease Day. Adaptable materials to help people show their support in their language is being created.

For healthcare professionals, patients and families with rare diseases

The RARE-e-CONNECT project is co-financed by the European Regional Development Fund and the Republic of Cyprus through the Research and Innovation Foundation to promote the development of partnerships within the local healthcare community and with colleagues in Europe and worldwide. At the same time, it seeks to connect the Cyprus rare and ultra-rare disease patient community, support communication and strengthen ties with respective associations in Europe and internationally.

To this end, the platform offers a number of the following tools and resources:

1. Medical Teams: a virtual space that allows healthcare professionals to set up teleconferences in multidisciplinary or other types of arrangements with colleagues of their choice, exchange information and keep a record of their exchanges for better coordination.
2. Communities: online large-audience spaces where healthcare professionals from any location can connect and share information and files. There is one community for each rare disease group.
3. Repository of accredited specialised centres in Cyprus, Europe and internationally (members of the European Reference Networks, locally or internationally accredited centres, centres with which Cyprus holds interstate agreements for cross border health). Patient satisfaction is also stated for some of these centres.
4. Patient stories for patients to better understand diagnosis, prognosis and the various difficult aspects of the disease.
5. e-Learning opportunities for healthcare professionals

The COVID-19 pandemic has certainly shown how important it is to have a solid electronic infrastructure for information exchange between patients and between healthcare professionals. Tool pilots will produce evidence on the impact of RARE-e-CONNECT and determine best practices in terms of European integration with local services, especially for small EU countries.