Comments on: Afamelanotide (Clinuvel CUV1647) gets orphan drug status in the US http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html Where the rosacea community meets to support each other Tue, 29 May 2012 20:38:08 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: zz http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-44341 zz Fri, 27 Aug 2010 15:22:17 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-44341 hi i am too a vitiligo suffer aswill..i thought afamelantiode can help vitilgo?am in the uk dont know when we will got this drug or we dont get it at all..doctors in uk dont care about vitiligo paients from my experiences.....from the website it says this could help the repigmtion..or am i geting it wrong????? hi
i am too a vitiligo suffer aswill..i thought afamelantiode can help vitilgo?am in the uk dont know when we will got this drug or we dont get it at all..doctors in uk dont care about vitiligo paients from my experiences…..from the website it says this could help the repigmtion..or am i geting it wrong?????

]]> By: jaxx1 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-41064 jaxx1 Mon, 28 Jun 2010 20:15:09 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-41064 Hi I to am a sufferer of severe vitiligo with very little tan left . Will Afamelanotide help? Thanks Hi

I to am a sufferer of severe vitiligo with very little tan left .

Will Afamelanotide help?

Thanks

]]> By: patricia http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-41018 patricia Sat, 26 Jun 2010 08:00:04 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-41018 hi is there nothing that can cure vitiligo or at least slow it down ! i have had vitiligo for 30yrs just in the same 4 places on my body but in the last two yrs it just seems to be spreading very quickly. i am on thyroxine tabs for underactive thyroid i was on 150mg a dy then two yrs ago dr`s dropped it to 75mg cold this be something to do with it spreading ? thanx hi is there nothing that can cure vitiligo or at least slow it down ! i have had vitiligo for 30yrs just in the same 4 places on my body but in the last two yrs it just seems to be spreading very quickly. i am on thyroxine tabs for underactive thyroid i was on 150mg a dy then two yrs ago dr`s dropped it to 75mg cold this be something to do with it spreading ? thanx

]]> By: David Pascoe http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-38678 David Pascoe Mon, 24 May 2010 12:12:50 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-38678 Hi Jay, Your best bet is to contact the American Porphyria Foundation, who are hoping to create a database of all porphyria patients in the US. They should also be able to advise on clinical trials and locations. Be aware that even if you should find a suitable trial location there may be age restrictions in force as well. http://www.porphyriafoundation.com/ all the best, davidp. Hi Jay,

Your best bet is to contact the American Porphyria Foundation, who are hoping to create a database of all porphyria patients in the US. They should also be able to advise on clinical trials and locations. Be aware that even if you should find a suitable trial location there may be age restrictions in force as well.

http://www.porphyriafoundation.com/

all the best,
davidp.

]]> By: David Pascoe http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-38605 David Pascoe Mon, 24 May 2010 03:05:00 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-38605 Just updating my previous comment #15: afamelanotide, now known as Scenesse is available on prescription for sufferers of EPP in Italy. See: <a href="http://rosacea-support.org/afamelanotide-now-available-in-italy.html" rel="nofollow">Afamelanotide (Scenesse) now available in Italy</a> davidp. Just updating my previous comment #15: afamelanotide, now known as Scenesse is available on prescription for sufferers of EPP in Italy.

See: Afamelanotide (Scenesse) now available in Italy

davidp.

]]> By: Jay http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-38440 Jay Sun, 23 May 2010 14:12:06 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-38440 My son has EPP. How difficult or is it even possible to get him on the US trial list? My son has EPP. How difficult or is it even possible to get him on the US trial list?

]]> By: David Pascoe http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-36973 David Pascoe Fri, 07 May 2010 04:33:27 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-36973 Sorry Felipe, but afamelanotide is not available anywhere as yet. Only those in the clinical trials have had access to it. Sorry Felipe, but afamelanotide is not available anywhere as yet. Only those in the clinical trials have had access to it.

]]> By: Felipe http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-36972 Felipe Fri, 07 May 2010 03:55:58 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-36972 Anyone please help me today is may 6th 2010 can i get afamelanotide anywhere in the world please please have mercy Anyone please help me

today is may 6th 2010 can i get afamelanotide anywhere in the world

please please have mercy

]]> By: Barbara http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-30286 Barbara Sat, 26 Sep 2009 05:36:18 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-30286 Latest commercialization dates: Q1 2011 for Europe Much later for US. Why they are delaying in the US is beyond me but it's ridiculous and really makes me angry. They got the green light to start US trials in Juanary 2009 and here we are 8 mos later and no trials have started in the US. Pathetic! Latest commercialization dates:

Q1 2011 for Europe

Much later for US. Why they are delaying in the US is beyond me but it’s ridiculous and really makes me angry. They got the green light to start US trials in Juanary 2009 and here we are 8 mos later and no trials have started in the US.

Pathetic!

]]> By: kat http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html/comment-page-1#comment-28402 kat Thu, 18 Jun 2009 15:42:34 +0000 http://rosacea-support.org/afamelanotide-clinuvel-cuv1647-gets-orphan-drug-status-in-the-us.html#comment-28402 I have suffered from PMLE my whole life and can not wait for this to be accepted by FDA in the US! I have suffered from PMLE my whole life and can not wait for this to be accepted by FDA in the US!

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