Cystinosis Community

Meet, discuss & support other patients or families living with Cystinosis. Contribute to topics, or just share what's on your mind

martacampabadal
moderator

FDA Approves Topical Cystinosis Treatment

Hi everybody,
I'm Marta, Online Community Coordinator at EURORDIS. I've seen a post I'm sure you'll be interested in.

The Food and Drug Administration approved Cystaran, which treats a symptom of the rare genetic disease Cystinosis.

Read the article here: http://bit.ly/SKW5R1

That's good But you know the price
I use cystadrops cost 195 euro for unit.

ClaudiaSproedt
moderator

Hi Ahmad, where do you get Cystadrops from? I thought they were not to be bought already?
Claudia

Hi Claudia,
I buy it from orphan Europe directly pay to middle east office and they sent by DHL
sent to this emailsthey will help you
HORDISTA, Feurella <FHordista@orphan-europe.com>;
HASSAN, Hussein <HHASSAN@orphan-europe.com>;

ClaudiaSproedt
moderator

Thanks, so I will ask there!
Claudia