Writing Tips & Story Ideas

Telling your story

We strive for stories that are authentic and offer a meaningful takeaway at the end. Some things to think about when you write are:

  • What motivates you to write this story?

  • What understanding, insight, or transformation will someone gain by the end of your story?

  • Be as descriptive as possible to help others understand your experience.

  • Speak from your unique experience without making generalizations about others in a similar situation.

  • Be yourself and be authentic to connect with someone reading your story. Don’t be afraid to be vulnerable.

Story Ideas

For patients and caregivers

  • diagnosis day

  • journey to diagnosis

  • what rare means to you

  • impact on significant relationships

  • a life challenge and triumph

  • impact on your career, finances, or future

  • misconceptions of being rare

  • at-home nursing tales

  • access or barriers to care and treatment

  • emotional impact of living with a rare condition

  • support of a service animal

For medical professionals and industry allies

  • providing clinical care to rare patients

  • supporting patient advocacy organizations

  • challenges of developing treatments

  • helping to navigate the diagnostic odyssey

  • role of genetic testing and advanced diagnostics

  • emerging treatments and therapies

  • monitoring and managing complex conditions

  • coordinating care among multiple specialists

  • the future of rare disease research

  • policy recommendations to improve care

  • the unique needs of pediatric rare disease patients