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#RareCancer is anything but rare. Overall, 95% of all forms of cancer are considered rare. These cancers affect almost 1 in 3 new patients, or over 500,000 Americans each year. #RareIsntRare #RareRevolution
Everyone diagnosed with #RareCancer deserves an equal chance to live. We know that everyone matters, and it’s time that we start holding the system to that standard. #RareRevolution #RageToLive
Set a definition! To date, there is no official definition threshold of what legally constitutes #RareCancer The system is not intuitive. Resources are not available evenly. Outcomes are not consistent. #RareRevolution #RareIsntRare
Cover #MolecularDiagnostics: In 2019, one study found that 41% of profiled patients had potentially actionable mutations. Molecular diagnostics are especially important for cancers without good standards of care or adequate treatment guidelines. #RareRevolution #RageToLive
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Please tag us on Facebook and LinkedIn @ShepherdFoundation
Everyone diagnosed with #RareCancer deserves an equal chance to live. By challenging the rare cancer paradigm, we can create a world in which all patients have equitable opportunities, regardless of their diagnosis. To do this, we are attacking rare cancer from every angle - starting at the top with federal legislation. This means:
1. Setting a federal definition.
2. Covering molecular diagnostics.
3. Providing education & awareness training
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Please tag us on Instagram @SHEPHERD_Foundation and Facebook @ShepherdFoundation
If you have a personal experience with rare cancer, consider posting a short video clip and ending the post with the phrase “I’m joining the fight on behalf of all rare cancer patients, caregivers, and families. People are dying every day from #RareCancers. The system needs to change. The time is now.”