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Author Archives: zeighami
The Grassroots are United Behind ULTRA
The Unlocking Lifesaving Treatment Act of 2012 (HR 3737) is giving the rare disease world new hope. Across the country, people with rare diseases (roughly 10% of the population) and others are coming together at the grassroots level to show … Continue reading
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Unlocking Lifesaving Treatment Act of 2012
Patient advocates have amazing power. The 1983 Orphan Drug Act enabled an entire industry treating rare diseases. However, the fact is it wasn’t enough. A huge portion of the 7000+ rare diseases are still without treatment. This upcoming year, a … Continue reading
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If by Rudyard Kipling
If you can keep your head when all about you Are losing theirs and blaming it on you; If you can trust yourself when all men doubt you, But make allowance for their doubting too: If you can wait and … Continue reading
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Sanfilippo Congress: Geneva 2011(Updated)
Just a short note highlighting our trip to Geneva for Sanfilippo Congress. Sorry for any typos, I am blasting this out fast. I have tried my best to relay the information as I received it. I am not a scientist … Continue reading
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Why I support ULTRA
Dear EveryLife Foundation for Rare Diseases, Thanks for your support of ultra-orphan diseases. I am 100% behind this effort because its result would be tangible and measurable – namely how many rare diseases are granted accelerated approval based on a … Continue reading
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Support ULTRA – The Ultra-Orphan Lifesaving TReatment Act of 2012
Did you know: More people, collectively, suffer from a rare disease than HIV + AIDs combined Accelerated Approval has only been used once for a rare disease treatment (since 1992) Accelerated Approval has been used dozens of times for HIV … Continue reading
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Technology and Rare Disease
I believe that the rare disease community is on the verge of a revolutionary shift. What once was a weakness has become a strength. Our community is spread far and wide by its very nature. This broad distribution of people … Continue reading
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The Good, The Bad and the Ugly
Most days I just go about my daily business. Of course I am always aware of my son’s illness and it rarely leaves my mind but most days I am not bitter. I don’t often shake my fist at God … Continue reading
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Perception vs. Reality and How They Impact Rare Disease
I wanted to take just a short minute so crystallize a thought. As I read stories on the FDA and drug approval, I am struck by the way consumers/patient groups are characterized. There is an impression that is given that … Continue reading
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