Rare Disease Week 2016

This week I had the pleasure of participating in Rare Disease Week in Washington, D.C., which was organized by the Rare Disease Legislative Advocates (RDLA). It is the 5th year that they have organized this on Capital Hill through The EveryLife Foundation for Rare Diseases, (a 501c3 public charity, that is both a public policy organization as well as a patient centered organization). The RDLA is designed to be a clearinghouse and advocacy center for the rare disease community.

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During this week, the series of events were designed to empower patients and their advocates. Leaders from the National Institutes of Health (NIH) and National Organization of Rare Diseases (NORD) joined the representatives from the Every Life Foundation and the RDLA to educate over 330 patient advocates, who were in attendance, on how to get the word out to our legislative officials on the bills in Congress that can positively impact the rare disease community. Meetings were set up with the Congressman, Senators, or their assistants, so that the rare disease advocates could share a little about their disease, how it impacts them, and what is needed to help them from the federal government.

There are over 7,000 rare diseases in the world; 1 out of 10 people suffer from a rare disease; and over 50% of the diseases affect children.

Besides the various bills in congress now that can help those in the rare disease community, the Rare Disease Caucus (a caucus is an interest group of members of Congress who seek to raise awareness about a specific issue on Capital Hill), which was established in the House in 2010, has now expanded into the Senate in late 2015. This caucus provides a vital platform for discussing pressing policy issues and giving rare disease patients a voice in Washington, D.C.

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I had the pleasure of meeting with the legislature for Texas and sharing briefly what Myocarditis is, who it affects, how it presents, etc., and what the Myocarditis Foundation does for those affected by the disease. They agreed that it was an awareness raising for them, and I will stay in touch throughout the year to see how things are progressing in the Congress regarding the bills and the Rare Disease Caucus. It was a very empowering experience to make our representatives aware of us and what is needed to help those of us affected by rare diseases.

Gen Rumore