Search

The author claimed that the left government did not find money for children with rare diseases, but instead intended to allocate millions of euros to non-governmental organizations, which, according to him, do not benefit the people. He added that public money was also intended for gender studies. https://t.co/FnqfYw0wwo #redkebolezni #javnofinančno #nevladneorganizacije #SI (translated)

The vote of the MPs was AGAINST the fund for the treatment of children with rare diseases. When Tina Brecelj, Tereza Novak, Nataša Sukič, Vladimir Šega, and Asta Vrečko explain solidarity and care for the most vulnerable next time, show them this voting record. Words are cheap. #solidarnost #zdravje #redkebolezni (translated)

✅ AGAINST the bill for children with rare diseases voted 5 MPs: - Tina Brecelj / Left - Tereza Novak / Freedom - Natasa Sukič / Left - Vladimir Šega / Left - Asta Vrečko / Left Shame on you. #otrok #redkebolezni #politika (translated)

Finally, there will no longer be a need to collect bottle caps for children with rare diseases. @TOstrc and his team at @MinZdravje have prepared a law that addresses the provision of funds for the treatment of children with rare diseases at a systemic level. Without the introduction of new taxes. @DemokratiSLO we are fulfilling https://t.co/eOWlFnuoq8 #redkebolezni #zdravje #zakon #SI (translated)

I am following nothing but manipulations in the media and on social networks. They are systematically undermining our law on the Public Fund for Advanced Treatment of Rare Diseases. We are not taking money from firefighters! They are pushing exactly you to the forefront, while the manipulators are hiding behind. We will take from those. More in the video. https://t.co/RYJZ0CJMl3 #manipulacije #redkebolezni #javnosklad (translated)

After years of collecting caps, the law for the systemic financing of the treatment of children with rare diseases is finally on the table. At the same time, no one is taking anything away from anyone! The unallocated part of the income tax percentage, that is, the part of the income tax that taxpayers did not allocate to any beneficiary, should... (translated)

Dolgo smo čakali in dočakali!!! 🙏 Zakon o Javnem skladu za napredno zdravljenje redkih bolezni je na odboru SPREJET! 💪 V sredo gre na sejo Državnega zbora. Hvala vsem, ki ste verjeli vame in me niste poniževali v komentarjih. ✌️ Presrečen. Ponosen. Hvaležen. 🙏❤️ https://t.co/aKIBPVJDPa #zakon #redkebolezni #javnisklad

Ravnokar poteka seja odbora za zdravje, kjer poteka razprava o skladu za napredno zdravljenje redkih bolezni. Ko so imeli priložnost, niso uredili. Danes ureja naša @vladaRS Nihče vam ne more več obljubit kot Svoboda. A bili so prvi, ki so glasovali proti skladu. Vse jasno?? #zdravje #redkeBolezni #vlada

Sedemletni Miloš se je kot prvi v Sloveniji podvrgel revolucionarnemu gensko zdravljenju z zdravilom Vyjuvek, ki je letos postalo dostopno tudi v slovenskem javnem zdravstvenem sistemu in obeta izboljšanje kakovosti življenja otrok z redkimi dednimi boleznimi, kot je distrofična bulozna epidermoliza. #genskoZdravljenje #redkeBolezni #zdravje