The Meso Foundation has joined together with hundreds of other rare disease advocacy organizations as part of Rare Disease Week 2022.
Julie Powers, Meso Foundation Executive Director, is leading the Washington D.C. delegation, facilitating a virtual meeting with Representative Eleanor Holmes Norton on March 1, 2022. Heather Von St James, a mesothelioma survivor will also be representing the Foundation as part of Minnesota’s virtual meeting delegation.
Rare Disease Day is a global event, where advocates speak to elected officials and policymakers about the impact of rare diseases like mesothelioma. In the United States, a rare disease is defined as one that affects fewer than 200,000 people — mesothelioma affects approximately 3,000 people and is truly a “super rare” disease. There are an estimated 9,000 rare diseases, 5% of which have a curative treatment and collectively affect more than 30 million Americans.
Advocacy events like the Virtual Rare Disease Week on Capitol Hill 2022 give elected Congress members and staff a chance to better understand how rare diseases impact their constituents and what they can do. During each meeting, advocates present a series of legislative asks including inviting them to join the Rare Disease Caucus.
“My specific request is for continued support for the Congressionally Directed Medical Research Program (CDMRP), one of the two major research funding streams for mesothelioma — we are the other,” said Powers. “We want to make the Representative aware of the impact that this investment has on the lives of the residents of DC and warfighters and military veterans who are affected by mesothelioma.”
Von St James notes that “Minnesota has a pretty decent scorecard in working with rare diseases, so making the [legislative] asks is not difficult.” She adds that the virtual aspect of these meetings makes them more inclusive this year compared to previous years.
“When rare disease organizations come together on Rare Disease Week, our voice is louder and our collective goals (more research, support for rare diseases, implementing programmatic policies that make it easier to diagnose and treat rare diseases) are more visible,” said Powers and added that, “advocacy done well is a team sport.”
The Meso Foundation will also be representing our patient community at FDA Rare Disease Day 2022 that is happening on March 4, 2022 and we invite our community to join in the conversation.
