Do you know anyone who has gone above and beyond to become a rare disease policy leader or advocate in your state or even in our nation? Rare Disease Legislative Advocates (RDLA) is seeking nominations for the RareVoice Awards to be given on November 16th in Washington, DC.

Nomination categories include:

Congressional Staff

Has a staff member of a member of the U.S. House, Senate or Congressional committee been instrumental in helping to create and/or advance legislation that benefits the rare disease community?

Government Agency Staff

Do you know a government agency staff member who has gone out of his or her way to listen to rare disease patients and then take ACTION to benefit the community?

Patient Advocate – Federal Level Advocacy

Do you know an advocate or organization that has worked with Congress or federal agencies to spearhead change on behalf of the rare disease community?

Patient Advocate – State Level Advocacy

Do you know an advocate or organization that has crusaded on the state level to support and advance rare disease legislation or regulatory reform?

 

British film, television and theatre actor Jonny Lee Miller (left) and parent advocate Jeff Leider of Let Them Be Little X2 Foundation each received an Abbey in 2014 for their rare disease advocacy.

British film, television and theatre actor Jonny Lee Miller (left) and parent advocate Jeff Leider of Let Them Be Little X2 Foundation each received an Abbey in 2014 for their rare disease advocacy.

The RareVoice Award nominations are open to the public. Winners will be selected by an independent committee composed of representatives from the rare disease community including previous RareVoice winners.

To nominate a rare disease champion, please click HERE. Nominations close on July 31st, 2016.

The winners will be announced LIVE at the fifth annual RareVoice Awards ceremony on November 16that the Arena Stage in Washington, DC and will receive the coveted Abbey award.

The award is named after Abbey Meyers, the founder of the National Organization for Rare Disorders (NORD), and represents the “rare voice” speaking on behalf of patients, especially children, who might not otherwise be heard. The Abbey statue was commissioned for the RareVoice Awards from the renowned sculptor Nobe, who crafts each statue by hand in bronze.

 

RDLA, a collaborative program of the EveryLife Foundation for Rare Diseases, implements programs to empower patients to become advocates. The Foundation is committed to accelerating biotech innovation for rare disease treatments through science driven public policy. To learn more please visit http://everylifefoundation.org/.

 

X