Developing Elevator Pitches for Rare Disease Advocacy

Most of us are familiar with the term "elevator pitch." An elevator pitch is sharing one's story with another person and requesting action in approximately 5 minutes or less.

But what exactly goes into an elevator pitch for rare disease advocacy?

Deliver a concise message

When developing a pitch, focus on each part: identify what matters most, what the desired main message is, and why it is important.

Rare diseases are extremely complex. We can spend hours talking about all the aspects of one rare disease, but we don't have that luxury when making pitches for action. How do you abbreviate the complexities of a rare disease in such a short amount of time?

For an elevator pitch, identify the most important thing for a stranger to know about a rare disease and highlight that in 1 sentence – 2 at max. Someone can always ask questions if they would like more information.

Make the pitch personal

A pitch is not solely about the person pitching it. It is also about the requested action. Keep in mind that connection is essential for someone to "buy in" to the pitch and understand why it's important.

People are keener to invest their time, money, influence, and action when they feel connected to a cause – when it becomes more human and more personal – and knowing one's audience helps to make that connection. An audience focused on child medical screenings isn't going to feel as connected to a cause if the action in the pitch is focused on locating housing for elders.

My opportunity to make an elevator pitch

When I was introduced to one of my Cherokee Nation At-Large Councilors to request a proclamation for Familial Adenomatous Polyposis Awareness Week in 2024, it was an unexpected opportunity for an impromptu elevator pitch.

It was during our At-Large Meeting, meaning a lot was going on. It was loud, there were a lot of distractions, and the Councilor was meeting with anyone and everyone who came up to him, so I had to make my pitch quick – not even 5 minutes, more like 60 seconds.

Here is what my elevator pitch looked like

I focused briefly on my story – that I have a rare disease, familial adenomatous polyposis (FAP). I gave a brief explanation of what FAP is. I focused on the main aspect of FAP being a hereditary rare colon cancer syndrome that guarantees colon cancer with a higher risk for other cancers throughout the body.

Then, I made the connection for him as to why this is relevant to the Cherokee Nation. Its relevancy lies in that in my family, FAP has been passed down through my Cherokee family line.

Lastly, I made my action request – for him to request a FAP Awareness Week Proclamation from the Principal Chief for 2024.

How will my story end?

With this quick pitch, he gave me his card with his contact information and told me to email him my request. I did, and he agreed to bring it to the attention of the Cherokee Nation Council.

Will it be brought up and a proclamation signed? Only time will tell. But I have saved our email exchange and will follow up with him.

I also used this opportunity to email my other At-Large Councilor with the same action request. I explained that I met with and am communicating with the other At-Large Councilor. Though I did not receive a response to my email, I communicated the relevancy and that the first Councilor supports the proclamation request. This increases my chances of additional support by highlighting that I already have support from one Councilor.

Do you have an "elevator pitch" for your rare disease? What do you feel is important for others to know? Share in the comments below.