Posts tagged with elaprase

Immune Tolerance to Enzyme Replacement Therapies, Part 2: Idursulfase

Posted Tuesday June 17, 2014 by Melissa

In Part 1 of this series, I explored some of the background...

In Part 1 of this series, I explored some of the background concepts related to immunogenicity. Now let’s begin examining immunogenicity in the context of a specific example – idursulfase...

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Elaprase

OPEN LETTER to Dr. John Leong Chi-yan and the Hong Kong Hospital Authority re: Access to Idursulfase for the Tang brothers

Posted Tuesday November 26, 2013 by Melissa

**SIGN the Change.org petition to support the Tang brothers!** OPEN LETTER to...

**SIGN the Change.org petition to support the Tang brothers!** OPEN LETTER to Dr. John Leong Chi-yan and the Hong Kong Hospital Authority re: Access to Elaprase/Idursulfase for the Tang Brothers...

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Tangbrothers

Happy birthday Elaprase!

Posted Wednesday July 24, 2013 by Melissa

Today is the 7th anniversary of the FDA approval of Elaprase (idursulfase)...

Today is the 7th anniversary of the FDA approval of Elaprase (idursulfase) as the first treatment for Hunter Syndrome. On July 24, 2006, the FDA approved Elaprase. It provided HOPE....

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Important new data and disclosures re: Shire’s Elaprase

Posted Friday July 19, 2013 by Melissa

Most of us probably don’t read that folded, fine-print enclosure that comes...

Most of us probably don’t read that folded, fine-print enclosure that comes stuffed in boxes of medicine, even if the medicine is Elaprase, one we give to our children for...

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Elaprase

Why I Fear the Bubble, Part 1: The Pricing of #RareDisease Drugs

Posted Saturday January 05, 2013 by Melissa

NPS Pharmaceuticals just this week priced their drug for short bowel syndrome,...

NPS Pharmaceuticals just this week priced their drug for short bowel syndrome, Gattex, at an annual cost of $295,000 per patient. This price may not raise too many eyebrows among...

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Why I Fear the Bubble, Part 1: The Pricing of #RareDisease Drugs

Hunter Syndrome 2.0

Posted Friday December 07, 2012 by Melissa

I had a great conversation a few months ago with my friend...

I had a great conversation a few months ago with my friend Chris Dutcher, an adult with Hunter Syndrome. Now if you’re a friend who may only know Case’s “version”...

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It's a New Day

This is for all the Calebs

Posted Wednesday January 25, 2012 by Melissa

Have you realized that not all children with Hunter Syndrome can receive...

Have you realized that not all children with Hunter Syndrome can receive treatment? In some countries, if their brain has been affected by the disease or when that effect is...

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Faria family

What I wish I’d known about home infusions

Posted Wednesday November 30, 2011 by Melissa

Setting aside a day of your life each week to go to...

Setting aside a day of your life each week to go to the hospital can be hard. That alone is hard, but add to that the lunch and supply packing...

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Elaprase

Be Still My Beating Heart

Posted Friday April 29, 2011 by Melissa

(Humming to Sting as I type this) I really did have to...

(Humming to Sting as I type this) I really did have to still my heart when I heard the latest news. So as not to steal the Thomas family’s thunder,...

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Heart anatomy

Case’s Elaprase Treatment

Posted Saturday April 02, 2011 by Melissa

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital...

Every Thursday since July 2009, Case has traveled to Vanderbilt Children’s Hospital to receive an infusion of a drug called Elaprase. So, by now, Case has had approximately 80 infusions...

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Hospital bed sleeping