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20 Years of Thought Leadership

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With more than 20 years of thought leadership in healthcare, Saira’s blog offers insights into health policy legislation and regulation, health advocacy, trends in rare and ultra rare diseases, and more.

Check back for valuable posts.

 
 

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Latest Haystack Project effort: ICER’s proposed methodology for assessing value of ultra orphan drugs is dangerous for patients. Join us at HaystackProject.org and sign on to the ICER letter at the ACT NOW button.

It is our job in the ultra rare community to understand what ICER is proposing and push back thoughtfully and credibly. This ICER proposal would have a chilling effect on innovation/R&D. Ultra orphan patients, parents, caregivers, researchers and clinicians as well as related organizations are welcome to read the ICER letter at the ACT NOW button at HaystackProject.org and send in any questions so we are all knowledgeable in our advocacy.

Saira Sultan