Making our community aware plays a vital role in the success of any campaign. This is especially true in the rare disease arena. Because our patient cohorts are so small, there is no motivation for science and industry to take on our cause. This is where the community comes in. The power of allyship in rare disease was demonstrated masterfully during the HIV/AIDS crisis in the early ’80’s. No one could silence the advocates. They forced society to look at the disease and deal with it. In our own small ways, we carry this flag forward still today with our patient organizations.

Our position is not fair. However, if we don’t take our cause to the community, we will be lost in the pile of sad stories. The greater world community values health and fitness over chronic illness. Don’t believe me? How many magazines on the news stand celebrate Parkinson’s Disease versus celebrating fitness? We don’t need statistics to know that people are more likely to click on a picture of a fitness pro than a person living with an ostomy.

Advocacy Can Be Easy

Thinking about advocacy can overwhelm anyone, especially those of us who identify as introverted! The good news is that you don’t need to take to the streets with your homemade posters and bullhorns to be advocates. You don’t need to stage a rally at the government building to be effective. One way to effectively spread the word is to share and engage with HODA’s social media posts.

The organization posts on social media twice a week, so that should not be too overwhelming. Adding your thoughts or just hitting the like button is advocating in the simplest form. When you interact with a post, the algorithm recognizes that this is something that other people might like too. It will then suggest the post to people in your online sphere of influence. Imagine that…you…an influencer! You can also follow all of our social media accounts, and ask your friends and family to do the same.

Other Ways To Advocate

There is power in sharing your story. If you aren’t comfortable with having HODA publish it on our site, you can simply share with people in your community who show an interest. You don’t need to re-traumatize yourself in doing so either. You can create your elevator pitch and share as little or as much detail as you like. Stories help others to feel empathy and foster a passion for the cause. Your neighbor, Bob, may be looking for a way to channel his talent for fundraising, but lacking a worthy cause. We wouldn’t want to deprive him of that, would we???

How many times have we heard that knowledge is power? Learning about HOD and sharing what you know with interested parties is advocacy. Maybe you live next to a government representative, and you want to educate them on the plight of the community. Just having conversations is advocating and spreading awareness. Wear your HOD branded polo shirt to your next appointment. That almost always strikes up a conversation with medical professionals! When in doubt, just keep it simple!

However you choose to celebrate this HOD Awareness Day (October 5th), we hope that you do it with advocacy in your heart. The only way to success is with community involvement!

YOUR TURN!

What are your best practices for HOD Advocacy? How will you celebrate HOD Awareness Day this year? Tell us in the comments!