What Makes a Rare Disease Patient Advocate?

Rare disease advocates are patients that have a story to tell and are willing to share these experiences with the world.

Rare disease advocacy: What it takes

Our goal is to share the story of living with a rare disease to affect changes and inspire researchers, investors, patient organizations and foundations, policymakers, and pharmaceutical companies to understand the continued need to improve our quality of life.

Passion

Advocacy requires us to be passionate about bringing awareness to our health challenges. It pushes us to yearn for more information and a better understanding of our condition to be able to identify barriers and obstacles. These obstacles are what fuel our passion and what moves healthcare to advance research and outcomes.

A willingness to learn

As advocates, it’s important that we gain knowledge about our disease, care, and treatments. We should be equipped with an understanding of our conditions to serve as a resource for other patients and to have a greater impact and partnership with not only our care teams but other stakeholders working for change in the treatment and health landscape.

I personally have utilized my understanding of science, research, and my own health to advocate for bacteriophage therapy as a viable alternative to antibiotics. Having successfully received this treatment was a testament to the importance of my advocacy and understanding of research and advancement.

Getting involved

It is also imperative that with this knowledge, we work to bridge the gaps between medicine and the rare disease community. Through my own involvement as a patient advisor to companies, speaking on panels, and hearing the healthcare journeys of others, I have a comprehensive understanding of patient barriers and burdens within
a rare disease that I share widely to bring about change.

The success of clinical trials and bringing new drugs to rare diseases is also dependent on patient involvement and awareness. It’s important as advocates to be open-minded about participating in drug trials. We are the backbone of research.

Make your voice heard

Lastly, to expand our reach and amplify our voices, we should collaborate with other patients and groups. The more active we are on social media, publications, blogs, and advisory boards, the more people reach out to us. We can empower more people to use their voices for change. We are the consumers of healthcare, and we need it to serve us. Through these connections, we can share best practices and key insights and learnings to magnify the patient voice.

Be a rare disease leader

Rare patient advocates are emerging leaders. We are constantly trying to create awareness and aim to make the world a better place to live with a rare disease. It’s the hope that another rare disease won’t limit the lives of those diagnosed in the future and that we improve the diagnosis process for many others and develop viable treatment options.

Advocating for the future of advanced therapies for treating rare diseases is crucial to our community. Let’s continue to do our part in improving the lives of the millions living with a rare disease and their families by making rare diseases heard.