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What needs does RARE-e-CONNECT respond to?

RARE-e-CONNECT.eu: Utilising networking, tele-collaboration, e-learning technologies to produce national benefit in rare diseases

For Healthcare Professionals managing rare cases and for patients seeking communication with other patients for information sharing.

Finding ways to effectively manage the most vulnerable patient group of rare diseases remains a serious challenge for health systems across countries, and especially of small countries like Cyprus.

The effective management of such genetic, inherited and multiorgan diseases requires networking, multidisciplinary collaboration and good coordination between Healthcare Professionals at a national, European and international level. For people living with rare diseases, online research and networking with other patients are ways of dealing with the disease, helping to better understand the diagnosis and its future outlook, combat feelings of fear and isolation and secure the best possible (collaborative) treatment of the disease in general.

Funded by the European Regional Development Fund and the Republic of Cyprus through the Research and Innovation Foundation, the Cyprus Alliance for Rare Disorders has established the innovative RARE-e-CONNECT.eu platform, which is intended for both Healthcare Professionals and individuals or families living with Rare Diseases.

The goals of the platform are to promote:

(1) networking and new collaborations between Healthcare Professionals within Cyprus, with Europe and other countries for information sharing purposes and the development of specialized national knowledge where it is limited,

(2) networking between individuals living with one or more rare diseases with fellow patients in Cyprus, Europe and other countries for the purpose of information exchange and mutual support.

Today, the best practices of telecollaboration and e-learning are not an integral part of a dedicated national medical practice which results in a limited, fragmented use by Healthcare Professionals which is directly related to the time and tools they have available. Accordingly, communication between patients is equally limited and is also achieved depending on the means and networking opportunities available.

In an effort to create a structured online environment for meeting and information sharing according to the needs of the rare disease community, the RARE-e-CONNECT.eu platform supports the following features in Greek and English:

  1. Repository of centres specialised in 24 groups of diseases with low prevalence in the European Union. This is being completed in collaboration with the Cyprus Ministry of Health as part of the Memorandum of Collaboration signed between the Ministry and the Cyprus Alliance for Rare Disorders in November 2019. The repository will be updated to include all progress achieved and it is available to Healthcare Professionals and People/Families with Rare Diseases.
  2. Online communities for communication and information sharing, organised by disease group. There are distinct communities for Healthcare Professionals and individuals / families with rare conditions. Healthcare professional communities are not accessible to patients or vice versa.
  3. Creation of multidisciplinary medical teams or special interest groups for teleconferences, file and resource exchange with colleagues of the same or other specialties in Cyprus and abroad. This feature is only available to Healthcare Professionals and seeks to facilitate case management via decision making support, as well as coordination of care between professionals.
  4. Webinars on clinical and other matters. This feature is only available to Healthcare Professionals.
  5. Automated information feeds from major medical bases about new publications in the field. This feature is only available to Healthcare Professionals.
  6. Personal stories of people with rare diseases for the purpose of supporting the patient community. This feature is only available to people with Rare Diseases and families.

As the only interactive forum in Cyprus for the exchange of information and the production of specialized knowledge on rare diseases, the RARE-e-CONNECT.eu platform will act as a “bank of collective wisdom” between Healthcare Professionals and between patients respectively, providing solutions to the various challenges of diagnosis and proper management of rare clinical cases.

The ultimate goal of the project is to research and draw conclusions about the benefit that arises from the application of this model of tele-collaboration and distance learning and its potential for the development of national knowledge and specialization in diseases that affect only a small percentage of the population. The aim is also to explore a long-term implementation of such digital infrastructures for disease management and the provision of quality patient-centred health services.

The project implementation team consists of the Project Coordinator, Dr. Adamos Hadjipanayis, Paediatrician, Associate Professor of Paediatrics at the European University of Cyprus and President of the European Academy of Paediatrics; Dr. Victoria Antoniadou, Postdoctoral Researcher in Digital Education and Communication in Health; and the Cyprus Alliance for Rare Disorders as Host.

To access the platform, visit https://rare-e-connect.eu

 

Notes

* The Project POST-DOC / 0916/0222 is co-financed by the European Regional Development Fund and the Republic of Cyprus through the Research and Innovation Foundation.

*  The project has been approved by the Cyprus Bioethics Committee while individual issues have been discussed and received guidance from the Commissioner for Personal Data Protection. At the same time, the project has been described by the European Commissioner for Health and Food Safety Stella Kyriakides as an excellent example of networking in practice to address the challenges encountered in the field of rare diseases due to limited know-how and geographical barriers, especially in small Member States such as Cyprus.

 

Special thanks to:

* the Ministry of Health for its cooperation in creating a centre repository specializing in rare disease groups.

* the Cyprus Medical Association, which through its president Dr. Petros Agathangelou, has expressed the CYMA’s full support to this work and goals. CYMA will provide its auspices for educational events addressing the medical community, and will participate in the platform by posting scientific material of interest to the medical community of Cyprus.

* Dr. Michalis Agastiniotis, Paediatrician, former Director of the Paediatric Department of the Archbishop Makarios III Hospital, and former President of the Cyprus Paediatric Society for his very important contribution to the project.

Article available at ygeia-news (in Greek)


Greek version published in ygeia-news (05 August 2020)

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