What is cystic fibrosis?

On the 30th of September 2015 I had a stopover in a café without a concept in Liberec in the Czech Republic, I wanted to visit a vernissage of the calender called Salty woman. It was a great get-together which presented many beautiful models. On the introduction page was a photograph of a model and the author of a very gripping blog about the life with cystic fibrosis. She died 15 days after this vernissage. She lost her fight with cystic fibrosis. I didn´t went to this vernissage just by chance. I went there because of Claire, a dear friend of our family and a beautiful young lady, who in the same time as this article was written became three years old. Claire was born with cystic fibrosis. 

Cystic fibrosis is a fatal inherited disease, which affects primarily the respiratory and digestive system. It is still an incurable disease. There are per year around 40 children born in the Czech republic with this disease.  At this gethering I found out that from the time Claire was born they began in Germany and in the USA to test the first drugs against some of the mutations of this disease. Although the first cure for the mutation for this disease is curently still developing, I began to think that there is still hope for Claire to lead a normal life, when there will still be volunteers who are willing to help and gather information and provide support to patients. For me personally was the information about the developement of the cure so unexpected and sensational, that I decided to help to increase the awarness of cystic fibrosis and present ways to help those in need.

The patients with cystic fibrosis in the Czech republic are united and supported by the Cystic Fibrosis Club o. s. whose bank account and Paypal account is below this article. The club speaks directly with the health insurance companies but also with the Prime Minister or the Minister for Health about the establishment of the cure. According to the Club is this matter still not so very successfull. The cure is very expensive and the approval process for a new cure is very unpopular. The Czech doctors from the center for cystic fibrosis are calling out for the patients to take this matter in their hands with an open letter, they say that for the acceptance of the new cure, which the state should pay for is mainly in their hands (the open letters are on the website cfklub.cz). I think that this matter isn´t just in their hands, that´s why I decided to create an update under this article which I will gradually complete. You can also contact me via e-mail (ondrej.krabs@mailboxde.com), when you want to publish whichever milestone.  

Ondrej Krabs
Mailboxde.com GmbH



Czech Cystic Fibrosis Association
Kudrnova 22/95, 150 06 Prague 5, Czech Republic
Tel. + 420 257 211 929, E-mail: info@cfklub.cz
http://www.cfklub.cz

Bank details:
IBAN: CZ58 0800 0300 1519 2110 1329
SWIFT / BIC: GIBACZPX

PayPal:

The organization will gladly issue a deed of gift on your request.