Raising awareness about a disease or health concern can be an excellent means to foster an appreciation for patients and families, encourage donations to research, or even education about preventative measures. Awareness holidays offer major opportunities to get the word out about a specific disease or overall community. Patient advocates can take advantage of this larger platform to share their personal stories and have an even greater impact on the communities they represent. Below are a few tips on how to prepare for and capitalize on awareness holidays!
Keep it on the Calendar
First thing’s first: you need to be aware of any relevant holidays before you can contribute to the awareness of others! One easy way to keep track of these days is to record them on a calendar. There are many health awareness calendars floating around the internet that could serve as a great base. However, creating your own calendar, either with Google or via hard copy, will ensure that everything is personalized for your community. Having a calendar also allows you to plan and prepare ahead of time to maximize these days! This is essential for full utilization, and for some health issues, an awareness day might be the only large-scale opportunity to shine light on your community, which makes it all the more important to take full advantage.
Here are some example calendars to get you started:
Find the influencers in your community
Another important way to prepare for an awareness holiday is to keep track of any relevant organizations and other advocates. Often, organizations will advertise events aligning with an awareness holiday or promote additional campaigns that could be opportunities for involvement. Patient advocates can follow these influencers through social media or by signing up for company newsletters where applicable.
Developing a mental map of various influencers will also allow you to better understand interconnections within the awareness community. This could lead to potential partnerships that you otherwise may not have recognized.
Take the rare disease community as an example. Individually these diseases don’t receive much attention since they affect only a small portion of the population. In the United States, a rare disease is defined as one that affects less than 200,000 people, but many diseases are diagnosed in even smaller numbers. Mesothelioma is one of these extremely rare cases, as only around 3,000 diagnoses are made annually, meaning many people are unfamiliar with this disease. This is where the National Organization for Rare Diseases (NORD) comes in. Each February, NORD hosts Rare Disease Day, which brings together advocates supporting a multitude of conditions in order to amplify their collective voice and raise awareness together. This awareness holiday, while not specifically dedicated to mesothelioma, allows for collaborative awareness efforts that make a large impact in the entire rare disease community. This makes NORD a key organization for any patient advocates involved with rare diseases.
The more you know about the community you support, the easier it will be to find relevant partners like NORD to raise awareness with.
Your Awareness Day has arrived, how should you spend it?
You’ve probably seen announcements from organizations you follow about events, volunteer opportunities, or social media engagements. Attending an in-person event can be a great way to connect with people in your community and to find avenues to share your story. Sometimes, advocacy can be a simple act of showing up, so if there’s an event that you’re able to attend, do it!
Taking advantage of events like this wouldn’t be possible without first researching your community and social media is another great way to get involved. For any given awareness holiday, there will likely be a campaign organized by some of the prominent influencers, including Facebook Live style Q&As, TweetChats, or posting to Instagram or Snapchat. For the mesothelioma community, the Asbestos Disease Awareness Organization hosts a TweetChat on September 26, which is Mesothelioma Awareness Day. Another example is the “Kiss Cancer Goodbye” social campaign hosted by Stand Up 2 Cancer that encourages sharing photos and storytelling on various social media channels. These virtual events are great ways for patient advocates to get involved! Check out these tips on best practices to get involved in these chats! And if for some reason you’re not able to find a conversation to join on social media, don’t be afraid to speak out and start one yourself! As a patient advocate, your story needs to be heard and it’s always a great option to initiate a conversation.
Of course, there are other ways to make a difference, like donating to an organization, signing or starting a petition, or just having a conversation with someone who can all help your cause. Regardless of how you use your voice, every small effort can impact change.
Awareness holidays present a major opportunity for patient advocates to get involved, collaborate with like-minded influencers, and engage with others in and beyond the communities they support! Preparation and organization are the keys to successfully maximizing the impact.
Anna Suarez is a health advocate for patients, caregivers, and loved ones dealing with a mesothelioma diagnosis. She focuses on raising awareness about this rare cancer, educating others about prevention, and supporting the rare disease and cancer communities as a whole.