Interwencje Aktualności TVP3 Rzeszów - Pomoc dla Klary Kukułki z Mielca 18-04-2024

We would like to thank Everyone who attached a card with the inscription "I am running for Klara" 😀

Biegnę dla Klary TVP3 Rzeszów 17. PKO Półmaraton Rzeszowski 6.04.2024
I run for Klara - Kornel Kukulka - medal

RUNRZESZOW.PL

The 17th PKO Rzeszów Half Marathon was held on the 6th of April 2024 on Saturday in Rzeszów. Interested people could join the charity running campaign for Klara and attach the campaign identifier to their T-shirt - a card with the inscription "I am running for Klara." Thanks to their involvement PKO Bank Polski Foundation will make a donation of 10 000 Polish zloty to the account of the organization in which the girl is a ward - Siepomaga Foundation.

Information about the race:
The 17th PKO Rzeszów Half Marathon and the 9th PKO Half Marathon Relay have taken place on the 6th of April 2024 on Saturday in Rzeszów. Start at 9 AM.
Start on Kopisto Street and the runners have finished at the finish line located at the event square of Millennium Hall Shopping Center. The route of race has been running through the city streets and boulveards on the Wisłok River.

Participants of all activities could join the "I am running for Klara" campaign.

17. Półmaraton Rzeszowski

CYSTIC FIBROSIS

In Poland there is still no reimbursement for children under 12 years old who qualify for combined therapy with Kaftrio + Kalydeco medicines

Klara Kukulka has been treated with Argentinan generic medicine for over a year, which is equally effective.

The annual cost of treatment with the cheaper Argentinian medicine is approximately 50 000 US dollars.

These medicines turn fatal disease into chronic one and must be taken for the rest of life.

Help !

Make a donation

Donate 1,5% of tax to Klara in Poland

Klara Kukułka fights for every breath (Kornel Kukulka)

14th of January, 2024 Member of Polish Parliament Czesław Hoc submitted interpellation no. 826 regarding access to casual medicines for patients with cystic fibrosis. Response of Minister Maciej Miłkowski was received on 5th of February, 2024.
Thank You, Mr. MP.
However, The answer of Minister is general and doesn't bring anything new. There is no refund for younger children and it isn't known whether it will be because it is very expensive and the manufacturer must apply for refund himself and the price must be negotiated. After all, it's only about covering medicines that are already available with reimburesement for younger patients. Do the procedures have to be so complicated? The older ones have medicines, the younger ones don't have - the same medicines. This is Polish absurdity. Younger children already have reimbursement throughout Europe !

Interpelacja nr 826

We would like to thank Memember of Parliament Elzbieta Burkiewicz for her announcement to submit the interpellation on December 7, 2023 (11:17:33 ➾ 11:19:35):

We have been asking for a reimbursement for over a year. Unfortunately, without success. Statement by Member of Polish Parliament Krystyna Skowronska on 7th of July, 2022:

 

Charity concert for Klara Kukulka, PSM Mielec, 5th of November, 2022:

 

Last year, two articles about Klara were published on the website zdrowie.gazeta.pl:
Jest skuteczny lek, ale 6-letnia Klara go nie dostanie. Rodzina próbuje ją ratować
Mukowiscydoza: 6-letnia Klara ma już leki. To a chwilę może być największy problem

An article was also published on the website rzeszow.wyborcza.pl:
Co robić, gdy życie dziecka wyceniono na setki tysięcy złotych? Rodzice Klary walczą i proszą o pomoc

A report was also publised on TVP3 Rzeszow TV:
Pomoc dla Klary z Mielca

 

Reimbursement of the above medicines for children aged 6 and over is now available in most EU countries.

Watch the report in Fakty TVN from 6th of September, 2023:

Fakty TVN 6-09-2023, brak refundacji dla dzieci chorych na mukowiscydozę poniżej 12 roku życia

 

The average life expectancy of cystic fibrosis patients in Germany has increased by 3 years - now it is 60 years, thanks to triple ETI therapy (elexacaftor/tezacaftor/ivacaftor - Kaftrio + Kalydeco medicines). Children in Poland, including Klara, do not have the chance to live longer. Read the newsletter of the German organization Mukoviszidoze e.V. from 24th of November, 2023:

Aktualne statystyki z Niemieckiego Rejestru Mukowiscydozy newsletter

 

Statement by Member of Polish Parliament Krystyna Skowronska before a charity concert for Klara Kukulka on 3rd of November, 2022:

You have taken power in Poland, Mr. Chairman, now we are waiting for the effects of your rule Mr. Donald.
Statement by Donald Tusk, Płock, 7th of October, 2023 (15:36 ➾ 18:57):

 

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last website update 25th of April, 2024