Re: Idebenone (to buy on line)

[Guest guest]

Thanks all to answering my question re Idebenone. I really hate for

my son to be the " first kid on the block " to try it locally. But,

I guess we will because it sounds ok to me based on some of your

feed back and because I respect our Dr Ambrus. If he is prescribing

it, it should be ok.

I'll buy it online but I was hoping someone had a a recommendation

of a reputable source.

[Guest guest]

I found this on the FDA website. It doesn't answer your question

about where to buy online, but it looks like this was given an

orphan drug designation. I have no idea how to check this out

further... but here's what it says:

www.fda.gov/orphan/designat/designytd.rtf

List of Orphan Products Designated Year to Date 2004

Total Number of Active Designations = 110

Generic Name: Indication Designated:

Idebenone (INN) Treatment of cardiomyopathy associated with

Friedreich's ataxia

Trade Name (if present):

Sponsor and Address

Santhera Pharmaceuticals LLC

Hammerstrasse 25

Date Designated: 3/25/2004 CH-4410 Liestal

Marketing Exculsivity Date:

SWITZERLAND

>

> Thanks all to answering my question re Idebenone. I really hate

for

> my son to be the " first kid on the block " to try it locally.

But,

> I guess we will because it sounds ok to me based on some of your

> feed back and because I respect our Dr Ambrus. If he is

prescribing

> it, it should be ok.

>

> I'll buy it online but I was hoping someone had a a recommendation

> of a reputable source.

[Guest guest]

Forgive my ignorance - but what does " orphan drug designation "

mean? I saw it mentioned here before but I never thought to ask.

Sorry for a stupid question.

Jim

> >

> > Thanks all to answering my question re Idebenone. I really hate

> for

> > my son to be the " first kid on the block " to try it locally.

> But,

> > I guess we will because it sounds ok to me based on some of your

> > feed back and because I respect our Dr Ambrus. If he is

> prescribing

> > it, it should be ok.

> >

> > I'll buy it online but I was hoping someone had a a

recommendation

> > of a reputable source.

[Guest guest]

Jim,

(No such thing as a stupid question.)

http://www.fda.gov/orphan/grants/index.htm

Orphan Product Designation

The Orphan Drug Act (ODA) provides for granting special status to a

product to treat a rare disease or condition upon request of a

sponsor. The combination of the product to treat the rare disease or

condition must meet certain criteria. This status is referred to as

orphan designation. Orphan designation qualifies the sponsor of the

product for the tax credit and marketing incentives of the ODA. A

marketing application for a prescription drug product that has been

designated as a drug for a rare disease or condition is not subject

to a prescription drug user fee unless the application includes an

indication for other than a rare disease or condition.

Maggie

> > >

> > > Thanks all to answering my question re Idebenone. I really

hate

> > for

> > > my son to be the " first kid on the block " to try it locally.

> > But,

> > > I guess we will because it sounds ok to me based on some of

your

> > > feed back and because I respect our Dr Ambrus. If he is

> > prescribing

> > > it, it should be ok.

> > >

> > > I'll buy it online but I was hoping someone had a a

> recommendation

> > > of a reputable source.

[Guest guest]

I found a little more info on Idebenone. Hope you can open this link.

http://www.mdausa.org/experts/question.cfm?id=2181

It is available in the US now......and Jim, I heard that Pine Pharmacy

is carrying it.

Pine Pharmacy

100 College Parkway

ville, NY

716 332 2172

>

> Thanks all to answering my question re Idebenone.  I really hate for

> my son to be the " first kid on the block " to try it locally.   But,

> I guess we will because it sounds ok to me based on some of your

> feed back and because I respect our Dr Ambrus.  If he is prescribing

> it, it should be ok.

>

> I'll buy it online but I was hoping someone had a a recommendation

> of a reputable source.

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in their

> own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

> one is automatically moderated or removed depending on the severity of

> the attack.

>

>

>

>

>

>

[Guest guest]

Jim, another phone number for Pine Pharmacy -

First number I gave is for the compounding lab - this number is for the

pharmacy, I presume. I have not been there myself.

>

> I found a little more info on Idebenone. Hope you can open this link.

>

> http://www.mdausa.org/experts/question.cfm?id=2181

>

> It is available in the US now......and Jim, I heard that Pine Pharmacy

> is carrying it.

> Pine Pharmacy

> 100 College Parkway

> ville, NY

> 716 332 2172

>

>

>

>

>

>

>>

>> Thanks all to answering my question re Idebenone.  I really hate for

>> my son to be the " first kid on the block " to try it locally.   But,

>> I guess we will because it sounds ok to me based on some of your

>> feed back and because I respect our Dr Ambrus.  If he is prescribing

>> it, it should be ok.

>>

>> I'll buy it online but I was hoping someone had a a recommendation

>> of a reputable source.

>>

>>

>>

>>

>>

>>

>>

>> Medical advice, information, opinions, data and statements contained

>> herein are not necessarily those of the list moderators. The author of

>> this e mail is entirely responsible for its content. List members are

>> reminded of their responsibility to evaluate the content of the

>> postings and consult with their physicians regarding changes in their

>> own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends

>> one is automatically moderated or removed depending on the severity of

>> the attack.

>>

>>

>>

>>

>>

>>