Sisters Nominated for Rare Disease Advocacy Award | Pleasanton News

Esha and Arya Cyril (seen left and right) are twin sisters in their junior year at The Quarry Lane School in Dublin. They are among 24 finalists for this year’s RareVoice Awards, presented by the EveryLife Foundation to honor volunteers who advocate at the state and national level for those afflicted with a rare disease.

Launched in 2009, the EveryLife Foundation for Rare Diseases works to advance government policy and legislation that drives development of treatment and cures for rare diseases.

According to the Washington, D.C.-based nonprofit, there are no FDA-approved treatments for 93% of the 7,000 identified rare diseases, each of which affects fewer than 200,000 people in the U.S. Fifty percent of those afflicted with a rare disease in the U.S. are children, 30% of whom will not live past 5 years old.

The Cyril sisters, who live in Pleasanton, were nominated in the Teen Advocacy category.

They began volunteering for a free clinic at a local community center for patients with limited or no health insurance several years ago. Motivated by family experiences with liver-related diseases, they now advocate for JoinJade, a global effort initiated by the Asian Liver Center at Stanford University to treat and eventually eradicate hepatitis B.

This summer, the 16-year-old sisters also formed their own nonprofit organization, Students Speak, to connect virtually with teens in other countries for discussions about culture, social issues and the United Nations Sustainable Goals. This fall, they received a Presidential Volunteer Service Award for their community service.

The girls also play competitive racquetball and are members of the U.S. Junior National Team.

The RareVoice Awards will be livestreamed from 4-5 p.m., on Dec. 10. Award winners will receive an “Abbey” statuette, named for Abbey Meyers, founder of the National Organization for Rare Disorders. Nominees for each category were submitted by the rare disease community. To register for the livestream, go to https://rareadvocates.org.

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