Share your rare disease story

Telling your rare disease story can positively impact so many aspects of a journey often fraught with anxiety. You can simultaneously raise awareness for your condition while connecting with a support community.

In fact, a study of 230 people with chronic illness who keep a blog found many benefits to blogging: it connected the study participants to others, lessened their sense of isolation and even promoted their own understanding of their condition.

In the spring 2016 issue of Community, we offered a variety of suggestions for how to share your story, including tips for planning your own awareness event.

Here are a few extra links to organizations or projects that might be looking for a rare disease story like yours. (Besides CVC, of course! See our patient stories Pinterest board.) Many are especially interested in gathering new stories to share for Rare Disease Day on Feb. 28. Check them out!

Gaucher disease stories

National Gaucher Foundation, Inc. collects stories for their website. No specific instructions are provided, but you can read other stories for an idea of what they want. They invite story submissions to ngf@gaucherdisease.org.

Pulmonary hypertension

If you have a PH-related story, there’s probably a place for it at the Pulmonary Hypertension Association. PHA collects and shares stories in a wide variety of categories, including diagnosis stories, patient stories, family stories, stories from caregivers, medical professionals and conferences. Submit yours through their detailed submission form.

Cushing’s disease

Cushing’s Support & Research Foundation collects stories and shares them on their website as well as their print newsletter. They have a brief online form for story submissions.

Cutaneous lymphoma

The Cutaneous Lymphoma Foundation collects stories for their website and newsletter. They have a form where you can submit your contact info to be in touch about sharing a story. (Learn more about the foundation from a Community magazine Q&A here.)

Bleeding disorders

The National Hemophilia Foundation collects Stories of Hope through a form on their website. You can read other Stories of Hope there for guidance. As the site says, “Each of us has a story to tell, and we want to hear yours.”

rare disease story

 

Narcolepsy

Narcolepsy Network invites your first-hand stories related to narcolepsy for its website. You can read others here and email narnet@narcolepsynetwork.org to submit your own.

 

For stories of any rare disease

Global Genes provides a fairly simple submission form for sharing your story, including questions to get you started and space to upload images. By submitting the rare disease story, you grant Global Genes permission to use it with you first name and photo “as part of our ongoing programs to increase rare disease awareness.”

National Organization for Rare Disorders also provides a submission form with instructions and photo uploading capabilities. The form is pretty clear about what they’ll do with which information they ask for, and the site says:

“Sometimes just knowing someone is going through a similar situation makes a person feel better than they would if they experienced the situation alone. Also, NORD meets regularly with legislators who need and want to know what their constituents are facing. That’s why NORD wants to share your Rare Stories!”

Contributors

Kelli Yoder, Publishing Editor
Kelli Yoder has a bachelor's degree from Goshen (Ind.) College and a graduate degree from Elon (N.C.) University.

Contact us

Did you enjoy this story? Email us your comments and questions and let's keep the conversation going. We encourage you to engage with us and other readers by following us on Facebook, Twitter, Instagram and Pinterest. Every person's journey is unique, and every perspective is valuable to us.