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Sign on Letter: Oppose EEOC (Equal Employment Opportunity Commission) Rule w/ Implication for GINA

Sign-On Letter From the Ovarian Cancer National Alliance:

“We strongly oppose any policy that would allow employers to inquire about employees’ private genetic information or medical information unrelated to their ability to do their jobs and penalize employees who choose to keep that information private. Therefore, we urge the Commission to withdraw this rule and maintain strong civil rights protections for all Americans.”

To read the full sign-on letter click here: Sign-on letter re EEOC NPRM on wellness programs

To sign on email: Laura Koontz:


Sign-on to Protect FDA Funding

From The California Healthcare Institute (CHI): We are working to protect critical funding for the drug review divisions at FDA, which are under threat of budget cuts that could greatly hamper the drug approval process. Organizations are being asked to endorse legislation, FDA SOS Act HR 1078, to protect these vital funds.

Read the full letter here – organizations that wish to sign-on may email Jenny Carey,


Action Alert: Support 21st Century Cures!

Would you like to help Congress pass the 21st Century Cures Act?

Congress is on the verge of voting on a historic bill called the 21st Century Cures Act (HR 6) – a piece of legislation that could be a game changer for the rare disease community. The bill contains several provisions to incentivize the development of treatments for rare diseases, and holds the potential to double the number of treatments available to rare disease patients.


Wicker, Klobuchar Introduce Bill to Increase FDA Transparency

Senators Encourage Accountability Regarding Productive Use of Patient Data

WASHINGTON – U.S. Senators Roger Wicker, R-Miss., and Amy Klobuchar, D-Minn., today introduced the “Patient-Focused Impact Assessment (PFIA) Act,” S. 1597, which urges greater transparency of product approval at the Food

Full Committee Vote on the 21st Century Cures Act

The 21st Century Cures Act will be considered in front of the full Energy and Commerce Committee:

Tuesday, May 19, 2015 – 5:00 pm and Wednesday, May 20, 2015 – 10:00 am

2123 Rayburn…

Advocates Get OPEN Act Back In Latest Cures Draft Ahead Of Thursday Markup

Todd Wilson from Inside Health Policy has a nice write-up on yesterday’s successful effort to include the OPEN ACT in 21st Century Cures. Thank you to everyone who took action!

Here is some of what Todd wrote:

House lawmakers, facing …

21st Century Cures Legislative Phase to Continue THURSDAY

Energy & Commerce Subcommittee on Health to Markup Updated Discussion Draft of 21st Century Cures

The Subcommittee on Health has scheduled a markup on Thursday, May 14, 2015, at 10:00 a.m. in room 2123 of the Rayburn House Office Building …

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