Welcome to Rare Disease Week

Welcome, Advocates, to the 12th annual Rare Disease Week on Capitol Hill!

We are so honored that you are sharing your time so generously, using your vacation, braving COVID and flu season, and spending your own funds to travel to join us in Washington, DC. The EveryLife team is in awe of your courage, dedication and passion for rare disease advocacy. We are grateful to have you here with us. For the first time, our Rare Disease Week registrants represent every state in the country and the sovereign Cherokee Nation. This year, your stories and influence as rare disease ambassadors matter more than ever. Here’s why:

Rare disease is a public health crisis that affects all of us.

In 2021, EveryLife released a first-of-its-kind study that found the cost of rare disease in 2019 was a devastating $1 trillion dollars. By prioritizing, incentivizing and accelerating rare disease treatments access to those treatments and more timely diagnoses, we can alleviate the crisis and save lives.

We are welcoming in a new Congress. There are many newcomers to the Hill who may not be familiar with historical issues affecting rare disease patients and their families. Helping them understand your needs as a valued constituent is vital to cultivating their support for legislation that can advance drug development and the policies that make new treatments accessible and affordable.

We are observing the 40th anniversary of the Orphan Drug Act. Since it was enacted with bipartisan support in 1983, this law has saved or improved countless lives. On the 40th anniversary of this truly life-changing legislation, we must urge our lawmakers to protect, strengthen and grow the ODA to serve rare patients in today’s fast-changing scientific landscape.

On behalf of the EveryLife Team and our volunteers and partners, we wish you an exceptional week in Washington, DC.

Rare Disease Week is important to me because advocates from across the country are collectively raising awareness about rare diseases and the challenges this community faces. Our stories, one after another, can impact legislation and better health outcomes for rare disease patients and families.”

Sarita Edwards, Advocacy Chair

Rare Disease Week on Capitol Hill

2023

I love Rare Disease Week because I get to witness advocates harness the unique power of their stories into conversations about impactful policy changes.”

Abbey Hauser, Advocacy Vice Chair

Rare Disease Week on Capitol Hill 2023