By Emma Rooney @blumencasey
Did you notice that the online world is a happening place for rare disease stories? There are now entire sites, like the RARE Daily, dedicated to the latest rare disease news and patient stories. Many patient organizations profile member stories on their websites and offer discussion forums where patients can publish posts about their experiences. A growing number of patients are keeping blogs to chronical their health journeys or contributing to communal sites dedicated to amplifying the voice of patients.
If you have a health story to tell, here are some tips to help you to decide where to promote your story:
- Get to Your Target Audience
Once you have a story in mind, think about who should read your story. Then consider the story sources that are most familiar to your target group. Where are they already looking for information? You increase the likelihood of your story getting noticed by using an avenue your desired audience follows.
We have a tendency to think bigger is always better. So we end up putting our attention on getting the most views possible rather than directly targeting the people who could benefit from our story or using our story to effect change. At the end of the day, a large number of ‘likes’ on social media may not produce the results we are hoping for when we miss reaching key decision makers or those we set out to support.
Before committing your storytelling efforts, explore a variety of outlets for sharing your story, and then consider the advantages of each option in relation to your personal storytelling goals. For example, if you’ve decided to participate in a rare disease charity run, contributing your story to a local running store newsletter might offer new exposure, amongst the running community, to your cause. On the other hand, if you’re writing about your personal experience starting a new treatment, offering your story to the patient organization you are part of could be the best approach to connect with other patients who can relate. If you want to speak about the challenges you went through in getting a diagnosis and the benefits of finally having the correct information, you might seek out a platform where you can reach physicians and/or medical students with your perspective. Contributing a patient testimonial might be another approach to drawing attention to the impact of a healthcare service you’ve received.
If you are looking to advocate and provide patient input on a health policy that’s under debate, why not write a letter to your local government representative that includes your personal story to illustrate how a decision will impact someone living in their constituency? At a later stage, after you’ve allowed time for a response, you may decide to go a step further and look for a site to publish the letter openly. If you see that you can offer a missing perspective on a current health story in the news, take the opportunity to contact a reporter covering the story and offer to be interviewed or provide a statement. You could also share your story by writing a letter to a newspaper editor responding to an issue being covered. There’s no shortage of places that might be interested in your particular story, so be sure to take advantage of the locations that can help you get heard by the people you want to influence.
- Find Your Storytelling Home
If you’re committed to sharing ongoing stories, it might be time to look for a storytelling home where you can contribute periodically or even propose an ongoing series. Your storytelling base can help you establish an audience by making it easier for people to find you and know where to check back for updates. Seek out sites that reflect the values that are important to you and offer content you appreciate. If you notice a gap that could be filled by the types of stories you want to offer, take advantage of it and share your point of view.
Research the guidelines and deadlines for contributing and understand the submission process to make sure the expectations are realistic for your storytelling interests. Your level of experience, your current following, and your time availability can help determine your needs as a storyteller. Ask questions of the site owner or publication editor and connect with current contributors to understand more fully what a location offers. Furthermore, it’s useful to find out what help can be expected in terms of editing, publishing design, and promotion. You will also want to gauge whether the location you are considering provides a supportive storytelling community where you can count on reciprocal sharing, including giving and getting feedback from fellow storytellers. Belonging to a community of storytellers can help you to strengthen your process and keep you engaged for the long run.
- Become a Rare Story Promoter
When you come across rare disease stories that help and inspire you, consider making the effort to share these stories with your network. Not only will you be helping to spread awareness and useful information, but it’s also a great way to encourage storytellers and establish the value of including patient stories. Also, regardless of where you decide to share your own journey, be sure to take the time to promote your stories though all the social media platforms you belong to, such as Facebook and Twitter. There’s a lot of information online, and you can help people find the right stories by leading them there.
For more promotion ideas visit the new RARE Toolkit —How to Promote Your Rare Disease Story Through Social Media. To help find online stories from rare disease patients, the My Normal Project is growing a list of sources at http://list.ly/list/yLj-rare-disease-patient-stories. You can add to this list your favorite stories