Current views and future perspectives

The H.C.F.A.  participated in the Cystic Fibrosis Workshop on 20-21 April 2013, on the topic “Cystic Fibrosis: modern views and future perspectives”, organized by the Horemio Research Laboratory and Mr. Emmanuel Kanavakis.

A truly impressive two-day workshop, where most of the physicians and health scientists related to cystic fibrosis participated and a wide range of topics were developed, and there was a large public assembly on both days.

It started on the first day with the topics of prevention and molecular diagnostics, with emphasis on the peculiarities of gene mapping and the specificity of carriers and mutations in Greece, while there was also an extensive discussion on neonatal screening with the presence of a representative from Prague.

In the last part of the first day, a speech was given for a few minutes by the Greek associations for Cystic Fibrosis, the Association of Parents and Guardians of Children with C.F. of N. Greece, which is also in cooperation with the H.C.F.A. and the adult association of C.F. of Thessaloniki.

The representative of the H.C.F.A. after presenting the methodical efforts for a unified, multifaceted and scientifically documented representation of patients with C.F. nationwide, in the second part he tried to highlight the wrong interference of representatives of patients with C.F. in the efforts of institutions and health scientists, recognizing that the relationship between patient representatives and the scientific community is not what it should be.

Thus, the H.C.F.A. established the scientific committee for C.F., with the participation of all physicians involved nationwide who showed interest, and the next day made the official launch of the committee, where Mr. Kanavakis was appointed coordinator, with the aim of improving this relationship and direct cooperation.

LINK with the statements of the 3 associations:

Speech by Mr. Ravanidis, secretary of the association of parents of C.F. Thessaloniki.

Speech by Mr Preftitsis, President of the adult association of the Thessaloniki C.F.

Speech by Mr. Kontopidis, vice-president of the Hellenic Cystic Fibrosis Association – H.C.F.A.

On the second day, the presentation of the great work done by the Intersectoral Centre of Thessaloniki and the successful realization of the European registry continued, while the necessity of its continuation in the rest of Greece was emphasized, and there will be similar support from the Intersectoral Centre to the department of Agia Sophia regarding the procedures.

Extensive reports and analyses followed, both on adult and juvenile lung disease and on problems of the digestive system. Of particular interest was the participation of gynecologists where they reported on the pregnancy of patients with C.F. and the importance of prenatal screening.

The last session gave the necessary emphasis on physiotherapy, but there was also a presentation on inhaled treatments, home treatment and nutritional needs and the future was presented as more promising than ever as research phases and clinical studies show that radical treatments for the next mutations are a reality.

It is worth noting that following our personal request to both the KESY and the Ministry of Health to send a representative on the day of the presentation in order to be informed in person about our issues and especially about the lack of qualified doctors and the issues that arise, attended the opening Mr. Skandalakis, president of the KESY and from the office of Mr. Penteas (director of Mr. Salma) came Mr. Tatsis where he made a statement both during and at the end of the two-day meeting, outside the room.