PCD/Kartagener Syndrome Cyprus “Breathing Together”
The Cyprus Association for PCD/Kartagener Syndrome “Breathing Together” aims to inform patients and raise awareness to the public and to relevant bodies as well as to ensure the patients’ rights and improve their quality of life. Its members are sufferers, family and friends of patients, as well as scientists, doctors, nurses, physiotherapists with an interest in the condition.
What We Do
The Cyprus Association for PCD/Kartagener Syndrome “Breathing Together” aims to inform patients and raise awareness to the public and to relevant bodies as well as to ensure the patients’ rights and improve their quality of life. Its members are patients, patients’ families and friends as well as scientists, doctors, nurses and physiotherapists with an interest in this disorder.
Our Main Sponsors
The Cyprus Alliance for Rare Disorders (CARD) is a non-profit organization founded on June 2, 2010. Its purpose is to provide a dynamic and united voice to the approximately 60,000 patients with rare diseases currently diagnosed in Cyprus.
The Alliance plays an advisory role to patients by providing valid information on services in Cyprus and abroad. At the national level, the Alliance participates in and supports the intensive mobilizations of the Ministry of Health for the development of a national strategy for rare diseases. In this way, the Alliance safeguards patients’ rights to access quality care.
“Breathing Together” became a member in 2019.
One of the latest projects of the Alliance, includes the “RARE-e-CONNECT” platform which provides a single website for rare diseases in Cyprus. It is aimed at both health professionals and people with rare diseases and their families, allowing them to telework to deal with clinical cases or other professional purposes and to exchange experience and mutual support, respectively.
At the same time, the platform provides e-learning opportunities for health professionals and people with rare diseases through webinars, audiovisual material and other information about the latest news in their fields. PCD patients can visit the “Respiratory Community” where they can exchange information with other patients concerning their daily lives, the challenges they face living with PCD and other subjects that concern them.
Some statistics about PCD
People living with a rare disease in europe
of PCD patience have laterality defects
estimated incidence of PCD in births
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