A Panhellenic conference with the presence of all relevant healthcare/healthcare policy stakeholders, with numerous current subjects from the 38th European and 29th American annual conferences on CF, lung transplantations in Greece and abroad, patient stories and early results from the 1st respiratory restoration program for adults and children in Greece. An intervention in the Hellenic Parliament regarding our issues, and following the marketing authorisation of ORKAMBI (Vertex) that targets a large percentage of patients (homozygote patients with DF508) from the European Commission and participation in a medicine (ATALUREN) advisor committee of PTC. Awareness and informing actions as part of the “Each Breath” campaign, such as the 1st Greek TV spot and the short film in which patients star, TV shows about a patient that received a second transplantation, photoshoot with a football team, participation in the classic Marathon race and more.
European Cystic Fibrosis Week 2015
16-22 Νοvember
“Each Breath, a Step Closer to Our Treatment for 2015
Was this year’s slogan, as we’re waiting for the approval of innovative treatments.” These are the words that set the tone for European Cystic Fibrosis Week 2015 in our country by the President of the Hellenic Cystic Fibrosis Association, Dimitris Kontopidis, on Saturday November 14th in the annual conference that takes place once a year. At the same time, along with the Northern Greece Association for Parents of Children with CF, we organized a series of events (including awareness raising and TV spots, as well as personal stories by CF patients). Lastly, following the approval of Orkambi by the European Committee, we raised a series of questions to the Parliament regarding the issues faced by our patients in Greece. The actions that took place for European Cystic Fibrosis Week are:
40’’ TV SPOT and 2 min Video, ‘’Each breath – Living with CF’’
We presented for the first time a 40” TV spot regarding prenatal screening, as well as a short film about living with Cystic Fibrosis, performed and directed by patients!
40’’ TV for prenatal screening (to watch the TV spot, click here)
2’ video ‘’Each breath – Living with CF’’ (to watch the video, click here)
Annual Cystic Fibrosis Conference (Saturday November 14th)
The conference took place in a crowding amphitheater with patients, parents of patients and healthcare professionals. Important representatives of various institutions attended the conference and stated their support, as well as their realistic collaboration, such as Mr. E. Papasavvas, Dean of the Agia Sofia Children’s Hospital (Children CF Unit), Ms. D. Tsagdi, Dean of the Sismanoglio Hospital (Adults CF Unit) and Mr. Kammilatos, General Secretary of the “The Smile of the Child” NGO, all of which contributed to solving issues faced by CF patients in Greece. The entirety of the CF scientific community from all around Greece shared the newest advances from the 38th European and 29th American CF conferences, allowing for questions and an interactive discussion with the audience. Lung transplantations were a focal point, for which, apart from the discussion with the audience, Mr. V. Karambinis, President of the National Transplant Organization (NTO) and Ms. G. Menoudakou, NTO’s Head Coordinator attended a parallel meeting with doctors from the “Papanikolaou” hospital transplant team, in which an effort is underway to establish a unit for pre- and post- transplantation assessments. Personal experiences by CF patients who have undergone a transplantation Ms. Fyka and Ms. Georgaki touched the audience. Furthermore, the amazing results that working out showed for adults (Athens) and children (Thessaloniki) were presented in the conference. Lastly, a review of the successful 2012-2015 period for CF patients took place during the event.
(to view the Press Release, click here εδώ)
Participation in the annual Patients in Power 2015 conference (Wednesday November 18th)
Where the President of the Hellenic Cystic Fibrosis Association, Dimitris Kontopidis was interviewed about issues that patients with CF are facing. Many of those are common to other chronic diseases, which were represented by important institutions at the conference.
(to view the Press Release, click here)
Participation in the Advisor Committee for ATALUREN (PTC) – Barcelona (Thursday November 19th)
Participation of the association’s President, Mr. Dimitris Kontopidis, along with other representatives of european CF associations, in Barcelona. They were informed regarding the progress and staging that’s underway for the release, as well as the benefits of the medicine “Ataluren”, and they also attended workshops for various subjects, as a means to initiate constructive dialogue and more precise interventions of CF patients to the relevant stakeholders.
(to view the Press Release, click here)
Stand to raise awareness at the Avenue MALL Center
The association was active at the Avenue Mall, handing out leaflets and “Each Breath” products, in order to inform the public about the disease, and more specifically for young couples about prenatal screening .
(για την εκδήλωση πατήστε εδώ)
Questions raised towards the Minister of Health in the Greek Parliament
by member of the parliament by the “Potami” party, Mr. K. Bargiotas, regarding the serious issues faced by patients with CF in our country. Before that, various institutions (EOF, EOPYY, KESY, IFET) had been informed along with the MInister of Health’s scientific associate, Ms. Papathanasiou, in previous meetings and via letters, and we’re also waiting for a collaboration to solve these issues.
Personal experience on TV (Channel “E”)
The personal experience of Stella Georgaki at Ms. T. Stefanidou’s show, a patient who received a 2nd lung transplant, proving that there’s a 3rd chance to live, even after a 2nd one has been given to you
(to access the video, click here)
Photoshoot at PAOK’s (football team) practice in Thessaloniki
Following the initiative of the Northern Greece Association and its President Ms. R. Tzonou, young CF patients attended the practice of Thessaloniki’s largest football team (PAOK), whose representatives embraced this event and made the children’s dreams come true.
(για το βίντεο πατήστε εδώ)
(to access the video, click here)
Athens Classic Marathon – CF Athletic Team
A few days earlier, at the beginning of November, took place the Athens Classic Marathon race, with the first official participation of the Cystic Fibrosis Athletic Team “Each Breath”<, with their new apparel.
(για το βίντεο πατήστε εδώ)
(to access the video, click here)
