This Rare Disease Day Share Your Story

Each of us has a story to tell, and each story holds tremendous power for change if shared with others. I was reminded of this as Alonzo Mourning, Kevin Mott, Stacey Brayboy and Elisa Callejas honored us with their stories and experiences living with or caring for someone with a rare disease at the first public meeting of the Rare Disease Diversity Coalition held earlier this week. The meeting brought together more than 200 leaders who together have developed an ambitious roadmap to address health inequity and racism in healthcare. The stories we heard reinforce what we need to do. Cultural sensitivity training for providers, resources to better engage and empower patients of color, and legislation to accelerate rare disease diagnosis and treatment in diverse populations are critical to reaching people impacted by rare disease who have been underserved until now.

I was reminded of the power of stories again as Linda Goler Blount, president of the Black Women’s Health Imperative, addressed our team on Friday in recognition of Rare Disease Day, sharing about her dedication to alleviating the disproportionate burden of rare diseases on communities of color and to addressing the massive challenges of racial and gender-based health disparities affecting Black women.

We were also honored to hear from individuals who volunteer with three partner organizations, IgA Nephropathy Foundation, HCU Network America and the Global Foundation for Peroxisomal Disorders, who are making a difference in the lives of people touched by rare liver, kidney and metabolic disorders. Our guest panelists shared their stories – from diagnosis and how they are feeling today, to their hopes for rare communities.

In my last post, I shared my story of being diagnosed with a rare cancer that had no therapeutic treatment in my early 30s, and how that set me on a personal mission to help others.

And I have learned over time that there is no question…we are stronger together. At Travere, like so many organizations in rare disease, we live by a value of community. The many initiatives, partnerships and friendships formed even in just this past week are incredible examples of how we are all supporting each other and working together to innovate in an area that can often be overlooked.

This Rare Disease Day, I hope you will join me in committing to continue elevating patient voices and perspectives, so that together we can improve access to diagnosis, treatment and care for this amazing community.

I am so grateful to stand alongside every one of you – and I’m proud to be in rare for life.

Eric