Cystic Fibrosis Europe

2nd EUROPEAN CYSTIC FIBROSIS AWARENESS DAY. National awareness campaigns in Europe.

CF Bulgaria

A day before 21 Nov 2007 on TV (NOVA) there was about 15 minutes (17.30h-17.45h) TV show (live) with participation of two CF patients' mothers, sharing their therapeutic problems, as well as an open conversation with the chairman of BG CF association Prof. Ivo Kremenski and some other colleagues.
On 21.11.2007 in the morning, we organized in our clinic a celebration with participation of the chair of the University Hospital "Alexandrovska", BG CF association members, CF parents, CF patients and with a lot of radio- and TV- journalists. After a short opening speech (by the chairman of the BG CF association) there was a report , a PowerPoint presentation, concerning our positive and negative results in diagnosis and treatment of the CF disease, giving by me (Ivanka Galeva). After that, a lot of parents and patients shared the most important problems for them: missing the antibiotics for inhalation, fat soluble vitamins, inhalator devices etc. The renovation of our CF center (Sofia) was also announced.

A short reportage of the events was shown on TV in the evening and in the morning there was another short interview for BTV.

We believe we will manage to convince the authorities to do invest in Bulgarian CF patients.

Assoc. Prof. Dr. Ivanka Galeva, MD, PhD, Vice president of Bulgarian CF Association

Czech CF Association

• Media campaign
• Benefit theatre performance

Greece

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Our Association “Association for CF” in collaboration with the Northern Greece Association of parents gave a press conference on the 13th of November in Athens. The speakers were Dr. Helene Pouliou - CF pulmonologist, Angeliki Preftitsi - President of our Association and Keratso Katsioridou- Vice President of the northern Greece Association of parents. The press conference was a major success! More than 30 journalists from all over the country, including most newspapers, journals, TV and radio stations, attended. The journalists were totally unaware about CF. This was the first time they heard that Greece is home to more than 800 CF patients, more than 500.000 CF carriers and near 50 CF newborn babies each year. One issue discussed was the lack of compulsory prenatal diagnosis, which costs 150 Euros, and the annual patients’ treatment costs which are 40.000 Euros. All journalists were more than shocked by the fact that there are only 2 (!!) CF doctors for CF adults in Greece, and both of them work in different hospitals in Athens. Elsewhere in Greece, there is no CF doctor for CF adults! Another issue discussed thoroughly concerned the bureaucracy and the problems arising when accessing the list for Lung transplantation. The speakers mentioned the case of the death of a 25 year old girl who died without being listed for transplantation because of bureaucracy and many other red tape issues that we have to face as CFers in Greece.

A number of newspapers published articles about CF and the problems of CF patients in Greece, including the 5 most popular Greek daily newspapers (ETHNOS, ELEFTHEROTIPIA, TANEA, VRADYNI, ELEFTHEROS TIPOS,). In the last one (ELEFTHEROS TIPOS), the article for CF was their front page cover story!!!! There were also publications about our activities for ECFAD in these sites:

http://health.ana-mpa.gr/news.php?id=3918
http://www.kathimerini.gr/4dcgi/_w_articles_kathremote_11_21/11/2007_212789
http://www.espressonews.gr/default.asp?pid=21&catID=8&artID=501447;
http://www.disabled.gr/lib/?p=14247
http://www.iatronet.gr/newsarticle.asp?art_id=3259

Ourpresident,AngelikiPreftitsiandaCF pulmonologist, Dr. Pouliou Eleni, were been invited in numerous TV channels and radio stations in Greece to speak about the problems of CF patients. Angeliki Preftitsi talked at the newscasts at 14:00, at 19:00 and at 21:00. Greek Vice minister of health promised that the costs for prenatal diagnosis will be covered by the health insurances and he will try to improve the facilities and resources for CF people. On the 15th of November and following the previous press, television and radio station exposure, Angeliki Preftitsi was invited to participate in a live broadcast along with the minister of Health at the Hellenic public channel, NET. During their live conversation, the Greek Minister of Health acknowledged that he was not informed about CF but he promised that he has the will to take the first measures for CF. (Free prenatal diagnosis for all couples, improvement in facilities and training of new doctors in different parts of Greece).

Our hope is that the minister will keep his promises. Even two days following the massive press exposure, there were announcements about CF from CF patients and our problems in TV news. In any case, a great part of the Greek community has been informed about our problems!

On the 21st of November our Association made a statement about the 2nd CFAD which was sent to various government and parliament members of Greece, including the President of Hellenic Democracy. Some of them have already responded to our statement and decided to raise a campaign in the parliament for the rights of CF patients. On the other hand, members of our Association distributed leaflets about CF in central park as well as in the biggest shopping centre of Thessaloniki. The Athens news-Macedonian press agency published the statement that our association made for the 2nd ECFAD.

Finally, a few days ago our Association uploaded its official website regarding CF in order to better inform the Greek community, the CF patients and their parents about CF news. The website is www.cfathess.gr Let’s hope that a new day will begin next week for people with CF in Greece!

Angelika Preftitsi

Italy

• Media campaign with professional TV spot by Raul Bova, famous Italian actor (www.fibrosicistica.it)

FYR Macedonia

We celebrated the 2 European CF Awareness Day by sending e-letters to our Health Institutions and all national and some local public mediums. We used the CFE poster and most of the information's into the article you prepared so nicely and it became a really nice piece of work. Thank you very much for this opportunity. Unfortunately, the journalist were looking for more specific information's about the situation in our country and the very next day we came out by having 3 articles in national newspapers. Although the results should be and could be better… any word about CF in a country in which almost nobody knows nothing about CF is better then no word at all. But... it resulted with interest from the journalists and a story about CF will be in one very good health magazine.

We also got 3 min. in local TV station in rush hour and it was good. The other thing is that we are in process of creating a web-page which is going to be very helpful for making the association stronger and more compact.

And… we also managed to contact Solvay and were generously offered a support for the Macedonian CF Association with a Happy New Year Card. This is great news!

In between we were having problems with obtaining enzymes. In spite of this kind of unexpected problems from time to time I have a feeling better times are coming soon. Your support once again was and is very important. We still are not listed on the Positive National list of drugs (which will allow us to use almost for free colistin, pulmozyme and tobramycine), but recently we were informed it is going to happen in April.

With the very best wishes,

Snezana Bojcin

Poland: CF Foundation „MATIO”

•    Photography exhibition in the biggest shopping mall CH Zlote Tarasy (Gold Terraces) located in the centre of Warsaw from 23 November-7 December 2007. Opening ceremony with the press, radio and TV. The pictures presented were chosen as a result of photo competition “My View of the world” organized for CF suffers and their families by the MATIO Foundation.

•    Information about this exhibition and the II European CF Day in newspapers, radio stations and TV stations.

•    Traditional 3 day workshops for more than 100 parents of CF suffers (130 parents in this year).

•    Charity concert with 500 spectators (22 November 2007).

More information about the MATIO campaign: www.mukowiscydoza.pl.

Pawel Wojtowicz

Macedonia 2007 Poster

CF Spain

• A BIG campaign in the media.

Pictures IDS

Cystic Fibrosis (CF) or mucoviscidosis is the most frequent life threatening genetic disease in Europe. Sticky mucus blocks the lungs and digestive system. Although 1/30 Europeans carries the gene causing the disease and 30.000 children and young adults live with it, few people know of CF. Some patients get 40 years old…others 4, depending on where you live in Europe Help to make good care available to every CF patient!