If you’re looking to submit a story but aren’t quite sure what you want to write about, then we have some ideas for you! Below are prompts (some seasonal) that some of our contributors have found to be helpful. However, these are only supposed to serve as ideas; we welcome and encourage you to write about anything you want as it relates to your rare disease experience. Happy writing!

General Themes:

• Who/what are sources of critical support?
• What was your diagnosis journey like, or are you still on it?
• Has humor played a role in life with your condition?
• What is something you’ve learned from living with your condition?
• What do you wish you knew before you started this journey and what advice would you give others who have just started on theirs?
• What are the life changes you’ve had to make to adjust to your condition?

Seasonal Themes:

January:

Tells about the changes the New Year might bring for you, aligning with our annual, “New Year, New You” theme. #NewYearNewYou

May:

We will be highlighting mothers living with a rare disease or caring for a child with one. We will be doing this through a series of themed posts and memes on what rare motherhood is like. If you would like write an article on any variation of that theme we would love to feature it.

June:

We will be highlighting fathers living with a rare disease or caring for a child with one. We will be doing this through a series of themed posts and memes on what rare motherhood is like. If you would like write an article on any variation of that theme we would love to feature it.

July:

The 4th of July is on the horizon, and as the USA is thinking about independence as a country, Patient Worthy wants to know how you feel about your independence and challenges to it, as a rare disease patient. You can write about the caregivers, care partners, and support persons in your life; ways you’ve learned to make accommodations for yourself; ways your chronic condition may has made you more knowledgeable, responsible, and adaptable; or the ways that you feel your disease has limited your independence. This piece can take whatever tone you’d like so that the rare community to hear your voice!

December:

Christmas/Hanukah and other religious holidays. We welcome any and all viewpoints, but regardless of background, there are a lot of idealized stereotypes surrounding this time of year that may not be representative of your rare disease reality. Patient Worthy is hoping to help the world get a glimpse of the holiday season through your eyes. What does it mean to you to be living with a rare disease or chronic illness at this time of year? If you could receive any gift what would it be?