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Rodzice, których dzieci chorują na rzadkie choroby lub rodziny zagrożone wystąpieniem takiej choroby mogą uzyskać poradę w następujących placówkach lub stowarzyszeniach związanych z rzadkimi chorobami:

Wykaz poradni:
  1. Klinika i Poradnia Chorób Metabolicznych, Poradnia Genetyczna Centrum Zdrowia Dziecka w Warszawie,
  2. Poradnia Metaboliczna, Poradnia Genetyczna, Instytut Matki i Dziecka w Warszawie,
  3. Poradnia Metaboliczna i Poradnia Genetyczna Uniwersyteckiego Szpitala Dziecięcego w Krakowie-Prokocimiu,
  4. Poradnia Genetyczna, Instytut Psychiatrii i Neurologii w Warszawie,
  5. Poradnia dla Chorych na Porfirię, Instytut Hematologii i Transfuzjologii w Warszawie,
  6. Poradnia Zaburzeń Metabolicznych, Centrum Zdrowia Matki Polki w Łodzi,
  7. Instytut Pediatrii AM w Poznaniu,
  8. Górnośląskie Centrum Zdrowia Dziecka i Matki w Katowicach.



Towarzystwa wspierające rodziny z chorymi dziećmi:
  1. Fundacja Pomocy Rodzinom i Chorym na Mukowiscydozę,
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  4. Stowarzyszenie Rodzin z Chorobą Fabry`ego,
  5. W planach jest założenie Stowarzyszenia Chorych na Porfirię oraz Cystynozę.
 

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