PLATINUM Award for RARE-e-CONNECT at the Cyprus Healthcare Business Awards
Great honour for the Cyprus Alliance for Rare Disorders and the RARE-e-CONNECT team to receive the PLATINUM award at the Cyprus Healthcare Business Awards organised by BOUSSIAS Cyprus to highlight and reward good practices and innovative actions across the Health spectrum.
We are very proud that the organisation acknowledges our work in supporting and promoting for progress in rare diseases Cyprus for the second consecutive time.
This year, the award was attributed to the Doctor-Patient forum of the RARE-e-CONNECT platform, which allows patient and healthcare professional communication, thus increasing the time in which patients can learn about their diagnosis outside the clinic, and many other opportunities.
Last year, we received a Silver award for the overall platform design which also allows professionals’ networking with colleagues, acknowledging that everyday they face a multitude of conditions and diseases for which they cannot always develop expertise.
Thank you and congratulations to all winners. https://hba.cy/history/
RARE-e-CONNECT is an innovative space for sharing and collecting specialised information on rare and ultra rare diseases. This space was created based on existing needs. It promotes the dissemination of scientifically supported information, patient networking with other patients and families fully respecting their privacy while it continuously evolves to create new connections and knowledge based on expert contributions.
Today there are 240 rare disease patients participating on the platform. Their diagnoses can be classified under 24 groups of rare diseases , including undiagnosed ones.
There are also 210 professionals participating on the platform from almost all clinical, laboratory and allied health specialities.
Patients that you will find today on the platform have been diagnosed with rare diseases such as Primary Immunodeficiencies, Hereditary Cancer Predisposition Syndromes, Hereditary Metabolic Diseases, Pulmonary, Neurological and Neuromuscular Diseases, genetic syndromes that are not widely known in our country such as Williams syndrome, Kleefstra, PFAPA, Meige, Loeys-Dietz, XP, VHL syndrome and more. Some appear for the first time in our country.
Stay tuned for new information and networking activities to bring progress for rare diseases in our country.