California Healthcare Institute Spotlights Impact of Rare Diseases with Assemblymember Katcho Achadjian

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CHI partners with Achadjian for resolution to promote awareness of more than 7,000 rare diseases

Assemblymember Katcho Achadjian making remarks regarding Rare Disease Day on the steps of the California State Capitol, March 2, 2015

CHI remains committed to working with policymakers and stakeholders to advance policy initiatives that encourage and strengthen scientific innovation in California. - CHI President & CEO Sara Radcliffe

Today at the State Capitol, Assemblymember Katcho Achadjian (R-San Luis Obispo), in partnership with the California Healthcare Institute (CHI) and the National Organization for Rare Disorders (NORD), presented an Assembly resolution recognizing Feb. 28, 2015 as Rare Disease Day for the families and healthcare professionals caring for millions of Californians living with nearly 7,000 rare diseases. CHI is a nonprofit, public policy research organization, representing leading California academic institutions, biotechnology, medical device, diagnostics and pharmaceutical firms.

“The prevalence of rare diseases today should encourage patients, medical professionals, and Californians to come together to bring about a greater understanding of the over 7,000 rare diseases that currently exist,” said Assemblymember Achadjian. “I am proud to partner with the California Healthcare Institute to recognize Rare Disease Day in 2015 and raise awareness about this critical issue that affects nearly 30 million Americans."

“Our members are closely involved in research and development initiatives to advance treatments, tests and technologies for rare diseases,” said CHI President & CEO Sara Radcliffe. “Rare Disease Day is a time for us to be reminded of the daily difficulties faced by families and caretakers of patients with rare conditions. CHI remains committed to working with policymakers and stakeholders to advance policy initiatives that encourage and strengthen scientific innovation in California.”

Eve Bukowski, CHI’s vice president of state government affairs and a cancer patient advocate, participated in a ceremony at the State Capitol today, providing testimony about her journey as a stage IV colon cancer survivor. The ceremony, designed to raise awareness of rare diseases, was also attended by a broad spectrum of stakeholders including patient advocates, caregivers, legislators, advocacy groups, legislative staff and more.

Click here to view the Assembly resolution.

Background

A disease is considered rare in the U.S. if it affects fewer than 200,000 people. Approximately 50 percent of the people affected by rare diseases are children. To increase Rare Disease Day awareness and education, CHI published “Combating Rare Diseases in the 21st Century,” a report that spotlights the many therapies and treatment options CHI members are developing. The report also highlights a patient’s perspective and delves into the challenges these patients and their families face daily.

About CHI-California Healthcare Institute
CHI represents more than 275 leading biotechnology, medical device, diagnostics and pharmaceutical companies, and public and private academic biomedical research organizations. CHI’s mission is to advance biomedical research, investment and innovation through effective advocacy of policies to improve public health and ensure continued vitality of the life sciences sector. CHI’s website is http://www.chi.org. Follow us on Twitter @calhealthcare, Facebook, LinkedIn and YouTube.

Contact:
Will Zasadny
Manager – Communications; California Healthcare Institute
Zasadny(at)chi(dot)org
Phone: (619) 961-8848

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Will Zasadny, Manager of Communications
California Healthcare Institute
since: 03/2010
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