List otwarty do Pary Prezydenckiej RPDue to the omnipresent disability of providing children with NCL2 with treatment, we as the parents wrote the open letter to the Polish presidential couple.
The letter was published in naTemat.pl and the problem was taken on by Anna Kaczmarek.
You make it easier for us.
Sometimes we do not even know whom we should thank.
We are not always able to do it in person, but we are always thinking about you.
This smile is for you!

"Neuronal ceroid lipofuscinosis – most of people do not know what it is. The parents of children suffering the disease are able to pronounce its name perfectly…”
The report prepared by Alicja Górska in the Vatican Radio (od 5.11 min) http://www.vaticanradio-us.org/webcasting/polacco_1.mp3 and on wiara.pl: http://spotkania.wiara.pl/doc/2971361.Kubusia-wyscig-z-czasem

panorama 2016 02 23Kuba’s history is only one example out of 2 mln.
Just before the day of rare diseases the topic of the national plan returns, more about it in Panorama on TVP2 (from 23 min): http://panorama.tvp.pl/23872511/23022016-1800
I believed that our 2 years of wandering was just a coincidence for a moment. Unfortunately we are the classic example of the black hole in the system. Even Romania has a better approach to rare diseases.
I recommend the Łazarski University’s raport: http://www.gazetalekarska.pl/?p=20970

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