Peter Zdziarski: Protecting Our Community While Creating a Future Where We Are No Longer Needed
Peter Zdziarski, Founder and Marketing Director of Glanzmann Thrombasthenia Advocacy Network, shared a post on LinkedIn:
“There is a side of patient advocacy that most people never see.
The GRF is often approached by companies looking to partner with our community. Some partnerships create real value for both.
Others ask for data, access, or promotion that simply don’t align with our values.
Our responsibility has always been to protect our community and preserve a safe place where people can share openly without fear of that information being used outside of that space.
Our mission has never been to manage Glanzmann Thrombasthenia forever. It’s to help create a future where organizations like ours are no longer needed, which I believe is the ultimate goal for all disease nonprofits.
We hope future industry partners see the value of independent patient advocacy and the perspective only patients can provide.
Do I sound passionate and protective?
Of course!
I’m not just a board member. I’m a patient. I’ve grown with the community as we have evolved into an amazing place to get answers, sometimes even in real-time!
The best outcomes happen when nonprofits and industry work together while respecting each other’s unique role, especially for the patients we all serve.”
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