• The VASCERN App was officially launched in January 2019 and is available in the Google Play and Apple Store.
• This was the first version of the VASCERN App and it was only available in English.
• Since then, many improvements have been made and an updated version of the VASCERN mobile app (version 2.0) has been launched in August 2020.
• In this second version, new features have been added:
  • The inclusion of our 7 new Affiliated Partner Centers.
  • The translation of the app’s structure and disease names into various EU languages so that the mobile app will launch in the user’s device language for easier navigation and searching (please note that the content of each HCP card/PO contact card is still in English so that this information is accessible to all).
  • The inclusion of Referral Centers (Ref HCPs): centers that cooperate with the VASCERN European Reference Centers (ERN Full Members and Affiliated Partners) as part of the national networks and that can provide expert care to patients for rare vascular diseases.

• The VASCERN app currently includes datasets from:
  • 31 Expert centers within our HCP Full Members (blue cards) including: 5 from Belgium, 1 from Denmark, 2 from Finland, 4 from France, 3 from Germany, 1 from Hungary, 1 from Ireland, 5 from Italy, 2 from Sweden and 7 from The Netherlands.
  • 7 Affiliated Partners (blue cards) including: 2 from Austria, 1 from Cyprus, 1 from Luxembourg, 1 from Malta, 1 from Slovenia and 1 from Spain.
  • 32 Referral Centers (green cards) including: 3 from Belgium, 22 from France, 2 from Italy and 5 from The Netherlands.
  • 72 Patient Organisations (orange cards) including: 3 from Austria, 4 from Belgium, 5 from Denmark, 4 from Finland, 7 from France, 7 from Germany, 2 from Ireland, 9 from Italy, 3 from Norway, 1 from Poland, 1 from Portugal, 1 from Slovakia, 4 from Spain, 4 from Sweden, 2 from Switzerland, 8 from The Netherlands and 6 from UK.

• VASCERN App is a modular platform, that will be developed incrementally during the VASCERN lifetime through progressive updates and inclusion of new services as well as new HCPs and Patient Organisations from all over Europe as VASCERN expands.

• Together with our members, we will continue our efforts to improve the VASCERN app and better serve the rare disease community by:
  • Adding the missing translations of the diseases in all languages for all of our disease groups, with the help of doctors and patient organisations so that the content is as accessible as possible for every European patient. Currently translations for all diseases are available in Czech, Dutch, French, German, Greek, Hungarian, Irish, Italian, Polish, Portuguese, Slovak, Slovenian, Spanish and Swedish. Other translations are ongoing.
  • Adding new Patient Organisation cards, on the map as “Association”, in cooperation with our European Patient Advocacy Group (ePAG).
  • With the help of our members, adding new Referral HCP Centers in Europe, which are members of the national networks of our HCP Members and Affiliated Partners, and are recognised for their experience in taking care of rare vascular diseases patients, to enable patients to find the closest care to their home.
  • Correcting any discrepancies in the back office and ensuring the quality of the data entered.
  • Promoting the concept of this mobile app within the network of the 24 European Reference Networks for Rare Diseases, in order for this concept to benefit patients with other rare diseases not covered by VASCERN.

Version 2 of the VASCERN app is made possible by development work provided by Media 4 Health, datasets provided by our members, and management, data entry/quality control work by the VASCERN Coordination & Project Team. We equally thank Dr. Alessandro Pini, our VASCERN App Advisor, from IRRCS Policlinico San Donato, Italy. We would also like to thank our members for providing their data and helping us to test the second version before its release.

Media 4 Health is open to working with other ERNs who wish to create a similar mobile application in order to assist patients with their rare diseases. If interested please contact mario.mauri@m4h.it and info@m4h.it. If several ERNs are interested, they could enquire together as the project could benefit from economies of scale.

To our HCP, ePAG Members and users: if you have any comments & requests for changes regarding the information provided in the App, please contact us: vascern.coordination@aphp.fr

If you wish to have more information on how to edit your dataset in the VASCERN app, please find here a User Guide or watch here our video available on our YouTube Channel.