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Phase Zero – Early Stage Clinical Research – The Era of the Human Guinea Pig
Patients with rare diseases and parents of children with rare diseases are under a lot of pressure to alleviate...
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What’s in a Name? – Putting Rare Diseases Patients First!
We are really pleased to announce our name change from Rare Diseases Patients First to Putting Rare Diseases Patients...
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Patient Engagement – Just Another Buzz Word?
Any one that has been around the pharmaceutical industry for any length of time knows that there is a...
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Raising up an Army ……
Every parent of a child with a rare disease has a unique story to tell. So few will ever...
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The Rare Diseases Patient — At the Center of it All
There are 7000 rare diseases affecting about 350 million patients around the world. There are only about 400 treatments...
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Why the Name – “Rare Diseases Patients First!”
You may be wondering why the name “Rare Diseases Patients First!” The reason is that for so long patients...
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Getting from A to Diagnosis ……..
What would you do if you were experiencing symptoms but no one could tell you what was wrong? Imagine...
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Your Worst Nightmare …..
Your worst nightmare has come to pass. You have been given a diagnosis that has left you in a state...
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Knowledge is Power Even for the Patient with a Rare Disease
Few would argue with the fact that knowledge is power. We live in a society which is overloaded with...