5 Steps to Becoming a Rare Disease Parent Advocate


If your lifestyle has become overwhelming while caring for a medically complex child, the idea of being a rare disease advocate can seem daunting. “How do I add advocating for my child’s rare disease community when I can barely keep my head above water?” is something I hear all the time.

Having “been there” with my daughter Hannah, I remember that feeling quite vividly, so I wanted to put together some simple steps for someone who wants to get involved but is not sure how to start.

To advocate for your rare disease community does not mean taking on every aspect of change that needs to be made. Advocating in the rare disease space simply means “putting in the effort to create lasting change.”

1. Take a second to think about this question: What are the top three things you would you like to see to help increase your child’s quality of life? Would it be related to better healthcare information? Better therapeutic options? More research? Connecting with others who understand what you are going through?

2. Now that you have your top three things, single out your most important one and write it down on a piece of paper. This will become your goal. Take that piece of paper and tape it to the upper corner your computer monitor or somewhere else you will see it often.

3. Spend 20 minutes expanding your goal, this one topic. Define what actions you would like to see take place. List two or three objectives you feel are doable. For example, if your goal is healthcare provider education, then one of your objectives may be to share your rare disease story with more physicians.

4. Once you have your goal’s objectives in place, start to build strategies on how you can accomplish each of the objectives. Using the example above, contacting specialists or genetic counselors at a local teaching hospital would be a great strategy. Ask for help from other parent advocates (like me), regardless of what disease they represent. We are very much a #payitforward community.

5. Create a realistic timeline of what you are able to do and when so you can take action on your strategies. You do not need to do everything at once — pace yourself in what needs to get done so you don’t get burned out too quickly.

Most importantly, you are not alone in your journey. Each parent advocate you see in this community, like myself, has been where you are right now — filled with uncertainty and starting with baby steps and support from others who have walked in my shoes before.

Every advocacy step you work toward will not only make long-lasting change for your family, but also create hope for others in your rare disease community.

A version of this post was originally published on LinkedIn.

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