Advocacy, Education & Empowerment

Rare Disease Day

"Rare but Strong Together"

February 29, 2012 marks the fifth international Rare Disease Day.

On this day hundreds of patient organisations from more than 40 countries worldwide are organizing awareness-raising activities converging around the slogan “Rare but strong together”.

Get involved!

Meet the Challenge

Meet the Challenge!

Help us meet the challenge! Council member Kemp Battle is offering a match for each contribution we receive up to a total of $50,000. Please donate today, and then check back to see our progress.

Follow @geneticalliance

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# A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

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Network

Meet Your Neighbors

Meet Your Neighbors

23andMe's mission is to be the world's trusted source of personal genetic information. The company was started in 2006, when the two founders were frustrated at the pace of genetic research and the ability to translate that research into personalized medicine. Giving consumers the opportunity to access and understand their genetic information and directly participate in research changes the way genetic research is conducted and its utility for the general public. With the introduction of a program called 23andWe, customers can join an effort to translate basic research into improved health care for everyone through contributing their data to genetic studies. Recently, 23andMe announced that is has built one of the world’s largest databases of individual genetic information, including the DNA from more than 100,000 people.

View all our "neighbors"

Click here to become a "neighbor"!

Policy

Proposed Bill Prevents Public Access
to Research Papers

The Research Works Act, a bill introduced by Representatives Darrell Issa (R-CA) and Carol Maloney (D-NY), looks to reverse the National Institute of Health’s (NIH) public access policy. This policy, introduced four years ago, requires researchers with NIH funding to submit published manuscripts to Pubmed Central, a publicly accessible database. The new bill would no longer require researchers to make such a submission.

Read Michael Eisen's response.

Read publishers' response.

NIH Funding
Includes Creation of NCATS

President Obama signed the 2012 omnibus spending bill into law on Friday, December 23, 2011. The $915 billion bill, which generated passionate debate in Congress, increased spending for several science agencies, including the NIH (National Institutes of Health). The 2012 budget for the NIH will increase by $299 million compared to last fiscal year – to $30.7 billion – with almost half the entire budget going towards the creation of the new National Center for Advancing Translational Sciences (NCATS).

NIH Director Francis Collins recommended this center last year, with the increasing importance of promoting translational research – it will replace the National Center for Research Resources (NCRR).

Read more about funding in Nature.

CMS Proposes Implementing Part of
Affordable Care Act

The Centers for Medicare and Medicaid Services (CMS) posted a notice of proposed rulemaking (NPRM) on December 14, 2011. The proposed rule looks to put in place Section 6002 of the Affordable Care Act, also called the Physician Payment Sunshine Provision; making information about transfers (financial and otherwise) between medical suppliers covered by Medicare and Medicaid and physicians publicly available. It would also publicize information about potential conflicts of interest for a given physician, with concerned parties given 45 days to review and correct information prior to being released.

The previous deadline for a final ruling on the “Sunshine Act” was October 1, 2011, but CMS has requested public comments prior to implementing the new regulations.

Read and respond to the notice by February 17, 2012.

Is there a future for SOPA and PIPA?

The Stop Online Piracy Act (SOPA) and lesser-known Protect IP Act (PIPA) have generated considerable media attention in the past week; with websites like Wikipedia and Google publicly protesting the legislation on January 18, 2012. The two bills essentially deal with intellectual property and copyright protections, but have produced a vast range of reactions and interpretations.

Supporters of SOPA claim that it only looks to target foreign websites counterfeiting US property. Opponents of SOPA and PIPA, however, worry that the ambiguous language of the bills could have drastic and unintended consequences for US websites and companies. Because of the recent public backlash towards the bills, both are currently shelved in Congress; with voting being postponed.

Read about current state of SOPA and PIPA in Washington Post.