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Finding My Voice – Yemi Moses, Sr. Coordinator, Sickle Cell Disease
I grew up feeling like I didn’t have a voice. Or better yet, it took me a long time...
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Sickle Cell Disease — The New Frontier!
Introduction Putting Rare Diseases Patients First!(R) has received a modest grant from Pfizer, to provide an educational program (Webinar...
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Thank you for your support in 2019
As we come to the end of 2019, it is appropriate to take some time to thank you for...
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Show me the data!
When rare disease patients take part in clinical trials, they may never be able to see the results of...
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When is Enthusiasm a Bad Thing?
We all like enthusiastic people. They exude passion, interest and motivation that inspires us. However, can enthusiasm be a...
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How far away is the Billion Dollar Drug?
Pharmaceutical companies develop new treatments for patients who need them. The price of new medicines is going higher and...
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Conspiracy Theories About Cancer Cures Being Covered Up – Is Fake News!
I wish I had $1 for every time I have heard someone say that cures for cancer have already...
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Should you donate after the death of a child or relative?
I have heard first-hand of several instances where a parent lost a child, and in the aftermath of their...
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Rare Diseases in Argentina
Putting Rare Diseases Patients First!® is based in the US, but has a global outreach through its Direct to...
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Is it Time to Rethink Clinical Trials? FDA Thinks So.
A few weeks ago, I wrote about the need for patients to double check the Inclusion and Exclusion Criteria,...