Help Speed Treatment for Rare Diseases
Follow SF4K on Twitter
-
Seach My Blog
Archives
-
Latest Posts
Share This Page
Blogroll
May 2012 M T W T F S S « Feb 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 -
Spamfilter
FeedBurner RSS
Author Archives: zeighami
A Rare Disease Patient Perspective
I would like to use this blog post to explain why the rare disease community is different, and why it deserves a different approach to the approval of treatment. This weekend I started reading Inside the FDA: the politics behind … Continue reading
Posted in FDA Reform, Uncategorized
3 Comments
Unlimited Matching for Team Sanfilippo: August 24th at 1PM EST
On Wednesday August 24th – starting at 1PM Eastern, Vivint will be matching donations to participating charities. Unlike previous matching rounds, there will be no limit to the maximum match. (previously you could only donate $50). Here is the catch, … Continue reading
Posted in Uncategorized
Leave a comment
Response from Vivint on the Proposed Rare Disease Conference
Vivint has created the Vivint Gives Back Project as a way to give money to deserving charities throughout North America. Vivint also wants to help each organization involved raise awareness for their cause. We have maintained and continue to maintain … Continue reading
Posted in Uncategorized
Leave a comment
From the Shire Half Yearly Report
Just a short except from the report, it seems that investment is heating up! That is a good thing. Research and development (“R&D”) R&D expenditure increased to $354.8 million for the six months to June 30, 2011 (19% of product … Continue reading
Posted in Uncategorized
Leave a comment
Struck By Genetic Lightning
I just came up with a new phrase to show just how unlucky you need to be to get Sanfilippo Syndrome: Struck By Genetic Lightning. What are the odds? According to NIH, about 1 in 70,000. How frequent is that? … Continue reading
Posted in Uncategorized
Leave a comment
The Cost of Over-Regulation
I tuned in to the PDUFA hearing in Congress last week. PDUFA stands for Prescription Drug User Fee Act. Here is a description of its purpose: The Prescription Drug User Fee Act (PDUFA) was enacted in 1992 and renewed in … Continue reading
Posted in Uncategorized
Leave a comment
Reed was on CBS 11 in Dallas!
Many of you have probably already seen this, but here is the story that CBS 11 ran on Reed. Carol Cavazos did a fantastic job. Thanks!’ Roy
Posted in Uncategorized
Leave a comment
Vivint Video
Check out this video: Version #2, with different kiddos Thanks, Roy
Posted in Uncategorized
1 Comment
Reed has “the moves”
Who would think that this kid has a terminal disease? Sometimes I wonder if, because I am so worried about tomorrow that I am going to miss today. Hard not to do, I guess.
Posted in Uncategorized
3 Comments

