Recently I had the honor of attending the Rare Patient Advocate Summit put together by Global Genes. I could write a book about just this however let me tell you what I learned.
Never piss off a parent when it comes to their kids. I understand this as a parent however my heart and soul goes out to these parents in battling rare diseases that no medical professional can even diagnose!
I sat and listened to parent stories of having these incredible children that no one can help....and how they found help most times too late....and then one person started a group and then they became hundreds and then thousands trying to find a cure before another child dies. Powerful people.
The keys I took away....
1. The FDA is not the enemy...learn how to work it...go into the system and work it....and then change it from the inside...they are ready for change. The government is not that big :)...if you learn how to work and stop complaining. Complainers are negative and accomplish nothing. Go away until you areready to make change.
2. Make an incredible researcher your friend. Find a doctor friend and make her or him love your disease enough to research it and cure it ...one step at a time.
There is more coming today....come back.
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