Toolkit

Spread the word

Share news of the Living Rare Study with your rare disease community and those you know who are living with or caring for someone with a rare disease. Remember, the more people who participate, the more powerful our voice in helping to drive change!

Please note: If you use any of the materials below to promote the study, please ensure that you use the exact language provided. This is crucial because all materials have been reviewed and approved by an Institutional Review Board (IRB), and maintaining the approved wording is essential to uphold the integrity of the study. Text that is specifically highlighted as adjustable can be changed.

• Social Media Sample Posts: Sized for Facebook, Instagram, LinkedIn and X. Includes sample post copy in a Word document and post visuals in a PPT. Available as a ZIP file.
• One Page Study Backgrounder: This provides a topline look at the study, who can participate and the study goals. Available as a PDF.
• Email template: This is a customizable email that can be sent to individuals impacted by a rare disease that includes background on the study and links to register.
• Newsletter template: This is customizable newsletter article that can be can be put in a printed or online publication, and includes background on the study and links to register.