your superficial siderosis story

Your Superficial Siderosis Story


Reaching Out To Local Media

Do Your Research

Get to know your local media, including newspapers, television, and radio stations. Find out who is their target audience, how they present content on a weekly schedule, or which sections handle human interest or health issues. Most important, learn when their deadlines are. You should identify a list of writers, editors and broadcasters who produce segments or stories that feature medical rarities.


Offer to share your story with community groups and organizations, medical schools, or health fairs. These activities increase your chance of connecting with your local media and being approached for a quote or story.


Introduce yourself to reporters if you see them at an event. Offer to provide background information for a story, be friendly, but don’t be pushy. Nobody wants a social media stalker. Use their professional email address to reach out. If you think you have identified a press release opportunity please, reach out to the SSRA. Our media liaison, Deb Zindler, will be happy to draft an approved submission. The SSRA must approve all official press releases which include reference to the SSRA mission or as an organization, prior to submission.

National Outreach

The SSRA takes part in annual national outreach campaigns sponsored by organizations such as the National Organizations of Rare Disorders (NORD), Rare Disease Legislative Advocates (RDLA), and We will provide press release templates you can use by adding your personal story for submissions.