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CLSA Wire

Recap: 2016 Rare Disease Day Activities in Sacramento
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March 9, 2016

The California Life Sciences Association (CLSA) participated in the California Rare Disease Day State House Event on February 29th, proclaiming the date as Rare Disease Day in California, as acknowledged in Senate Concurrent Resolution (SCR) 108, authored by Senator Bill Monning (D – Carmel) and co-authored by Assemblymember Katcho Achadjian (R – San Luis Obispo).

Andrea Vergne, speaking as both the Rare Disease State Leader for the National Organization for Rare Disorders (NORD) and the parent of a child with an ultra-rare disease, acknowledged the difficulties individuals and families confront when faced with a rare disease diagnosis. More often than not, patients with rare diseases experience significant delays in diagnosis and issues with access to medical experts, new treatments, and needed ancillary services. For many like Andrea, Rare Disease Day serves as a critical reminder that, while millions of patients have benefitted from new treatments, many are still in need of accurate diagnosis and approved treatment options.

In the few years since the inception of the annual Rare Disease Day events in Sacramento, the event has grown from only a handful of supporters to last month’s roomful of legislators, patient group representatives, and advocates from across the country.

The growing numbers may also be indicative of a growing passion and commitment among stakeholders to continue making progress against the more than 6,000 rare diseases still without an FDA-approved treatment.

The day’s speakers, which included CLSA’s President & CEO Sara Radcliffe and Vice President of State Government Relations Eve Bukowski, expressed a commitment to engaging and educating those in government and the members of their communities about the fight against rare diseases, with hopes to raise awareness of rare diseases and maintain a policy environment conducive to finding treatments and cures.

“We are committed to building on this momentum towards making more diseases a thing of the past, and we look forward to our continued partnership with all of you because it will take all of us working together to ensure that state and federal policies support innovation in the rare disease field and ensure innovative treatments are accessible,” said Sara Radcliffe, CLSA President & CEO, addressing the other stakeholders at the event.

As an industry that is committed to saving lives, Rare Disease Day brings public awareness to individuals affected by rare diseases and reminds us of our commitment and progress in developing treatments for rare diseases.

Click here to view CLSA’s statement thanking Senator Bill Monning (D – Carmel) and Assemblymember Katcho Achadjian (R – San Luis Obispo) for sponsoring Senate Concurrent Resolution (SCR) 108, which proclaimed Feb. 29 as Rare Disease Day in California.

Questions? Please contact Brett Johnson, CLSA’s Director of State and Local Government Policy (BJohnson@califesciences.org).