2010 Genetic Alliance Annual Conference

Advancing Novel Partnerships
July 16-18, 2010  |  Washington, DC Metropolitan Area

Call for Award Nominations

Do you know a healthcare professional who deserves recognition for all he/she has done?

Have you been interviewed by, or read a wonderful piece by a creative journalist who furthers public understanding of genetics and/or disease?

Have you worked with a company that embodies meaningful collaboration?

Then, nominate them for a Genetic Alliance Award Today!

Deadline for Nominations: November 2, 2009

About the Awards

Art of Listening honors a health professional who is a caring, receptive professional in the lives of individuals and families living with genetic conditions.

Art of Reporting acknowledges a media professional whose reporting contributes to public awareness and understanding about genetic advancements or advocacy organizations and their impact on real people’s lives.

Art of Industry Partnership honors a for-profit Biotechnology, Pharmaceutical, or genetics company whose track record models the benefits of creative partnerships between consumer advocates and industry to advance understanding and treatment of genetic conditions, disorders, and diseases.

Nomination Information

For more information and to complete a nomination form, please visit http://geneticalliance.org/ws_display.asp?filter=conference2010.awards.

If you have any questions, please contact Tetyana Murza at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it or 202-966-5557 ext. 205. To view videos of 2009 Award recipients visit our YouTube channel at http://www.youtube.com/geneticalliance.

We look forward to reading about your exceptional nominees!

Genetic Alliance

Support Expanded Access to Clinical Trials: Eliminate Barriers to Clinical Trial Participation 

Current rules regarding eligibility for Supplemental Security Income (SSI) prevent many people with rare diseases who receive SSI from participating in clinical trials. The inability of SSI beneficiaries to accept research compensation for participation in a clinical trial has been shown to be a significant deterrence to research participation.

Congressmen Edward Markey (D-MA) and Cliff Stearns (R-FL) will introduce legislation to change current Social Security Supplemental Security Income (SSI) eligibility requirements so that research compensation for participation in a clinical drug study is no longer considered income for determining SSI eligibility.  (See proposed legislation)

ACTION

Write your U.S. Representative asking that he/she cosponsor this legislation that is so important to the rare disease community. They can contact Amit Mistry (202-225-2836) with Representative Markey or Nicole Alexander (202-225-5744) with Representative Stearns to co-sponsor.  (See the sample letter below.)

SAMPLE LETTER

As a constituent and one of the nearly 30 million Americans affected by one of the nearly 7,000 known rare diseases, I urge you to co-sponsor legislation to be introduced later this month by Congressmen Edward Markey (D-MA) and Cliff Stearns (R-FL) to change current Social Security Supplemental Security Income (SSI) eligibility requirements so that research compensation for participation in a clinical drug study is no longer considered as income for determining SSI eligibility. 

To help promising drugs move swiftly from the research and testing phase to the people who need them, more people with rare diseases are needed to participate in clinical trials. Yet, current rules regarding eligibility for SSI prevent a significant number of people with rare diseases from participating in clinical trials that provide compensation for participation.  As a result, many are forced to choose between taking part in important clinical trials and keeping their benefits, including Medicaid, which provides essential medical care.

This significantly reduces the number of patients able to help test promising new therapies. The bill to be offered by Congressmen Markey and Stearns will help potential new therapies for rare diseases to move swiftly from the research stage into the hands of patients who need them.

Twenty-five years ago, there were only 10 drugs to treat rare diseases. Today, thanks to the Orphan Drug Act, there are 339 orphan drugs, biologics and humanitarian devices that treat about 12 million men, women and children.

Help expand participation in clinical trials to provide treatments for the millions of people with rare diseases who continue to hold out hope that a life-saving therapy will one day be developed for their condition. Contact Amit Mistry (202-225-2836) with Representative Markey or Nicole Alexander (202-225-5744) with Representative Stearns to co-sponsor this bill.

Thank you for your help to ensure longer and healthier lives for all people with rare diseases.

GOOD NEWS!

The National Pain Care Policy Act 2009, S.660, has been introduced in the Senate!
URGENT ACTION REQUESTED:

CONTACT YOUR SENATORS TO REQUEST THEIR CO-SPONSORSHIP OF THE NATIONAL PAIN CARE POLICY ACT of 2009, S.660

The National Pain Care Policy Act of 2009, H.R. 756 has been in the House of Representatives since January of this year. It is currently pending the full vote of the House.

This bill has now been introduced in the Senate thanks to the efforts of Senator Orrin Hatch (R-UT) and Senator Christopher Dodd (D-CT). With this important bill now in both houses of Congress it is imperative that your Senators hear from you. Let your voice be heard! Take Action Now, inform your Senators that you are concerned about the hidden pain epidemic in our country and as a resident of their state you are requesting their support as a co-sponsor.

To view the National Pain Care Policy Act of 2009, S.660, please click here. 

Please TAKE ACTION by sending a letter to your Senator urging their immediate support for this important legislation! American Pain Foundation Online Advocacy Center will send your message for you. It is quick and easy, just click here to TAKE ACTION! 

Thank you for being part of this united effort to eliminate the under-treatment of pain in America.