get loud with our




#RareRevolution, #RageToLive, #RareIsntRare, #RareCancer

  • Twitter

Sample Tweets

We want to amplify your voice!  Tag us on Twitter @SHEPHERDFound

  • #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 every life 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

  • Increase funding: In 2019, 42.7% of cancers with fewer than 500 new patients per year had an FDA-approved targeted therapy, compared to 95% of cancers with more than 15,000 new patients per year. #RareRevolution #RareCancer #RareIsntRare

  • Facebook
  • LinkedIn

Facebook + LinkedIn

Please tag us on Facebook @SHEPHERD_Foundation 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 the same opportunity to live, regardless of their diagnosis. To do this, we must attack rare cancer from every angle - starting at the top with federal legislation. This means:

1. Setting the federal incidence definition of rare cancer at <6 diagnoses per 100,000 people per year in the United States.

2. Covering molecular diagnostics and genetic counseling at the time of diagnosis.

3. Increasing funding for rare cancer research and development and restoring funding to historic levels.

#RareRevolution #RageToLive #RareIsntRare

  • Instagram

Instagram + Facebook Live

Please tag us on Instagram @SHEPHERD_Foundation

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 rare cancers. The system needs to change. The time is now.”