Advocacy Newsletters

3/28/2019 - Orphan Drug Act Resolution Introduced in the House of Representatives


Representatives GK Butterfield and Gus Bilirakis introduced a resolution that celebrates the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation. Now in its 36th year, the ODA has successfully encouraged the pharmaceutical industry to develop therapies for those with rare diseases. Prior to the ODA’s enactment in 1983, only 34 therapies for rare diseases existed. Now, there are over 770 therapies on the market today to treat rare diseases. In addition, a majority of the novel drugs approved by the Food and Drug Administration (FDA) in 2018 were for rare diseases, the first time this has ever occurred. This incredible progress can be largely credited to the incentives within the ODA.

The National Organization for Rare Disorders (NORD) is asking the rare disease patient community to ask all Representatives to become a cosponsor of this Resolution and show their support of the ODA! Please consider reaching out to your representative today.

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3/19/2018 - Biggest Rare Disease Week on Capitol Hill Ever!

Dup15q Alliance Executive Director, Vanessa Vogel-Farley, spent a busy four days in Washington D.C. advocating for the rare disease community and Dup15q. While there, she met with many representatives from both the House and the Senate, connected with other rare disease advocates, and talked with researchers about their latest endeavors.

More than 800 rare disease advocates who traveled from 49 states plus the District of Columbia to join us during Rare Disease Week on Capitol Hill 2019, which took place February 24th – 28th! 

 450 of these advocates participated in 298 meetings with Members of Congress to bring our message: “Every voice matters!”

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2/27/2018 - NORD Policy Updates and Rare Disease Day

Dup15q Alliance partners with the National Organization of Rare Disorders to use collaboration to contribute to the united voice of the rare community. NORD helps with support of our organizational development and to help Dup15q Alliance to have a larger reach in our advocacy efforts. NORD's Rare Action Network started 2019 on a high note engaging in advocacy across the nation.


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January 14, 2019
1/14/2019 - Give Sam's Law (seizure first-aid training for Texas public school personnel) a jump start for 2019!

Sam's Law (HB 684) is simple. People who interact with children who have epilepsy on a daily basis should be trained to care for them if they have a seizure. The objective of Sam's Law is to ensure that Texas schools are well equipped with the tools necessary to provide a safe and enriching environment. This will ensure that the 47,200 children who have active seizures will have trained adults to properly assist them if they have a seizure at school.

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December 19, 2018
12/19/2018 - Orphan Drug Act Resolution Introduced in Congress


Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies indicated to treat a rare disease. Now, there are over 700 and counting! There's more work to be done, though. Approximately 95 percent of rare diseases are still without a single treatment approved by the Food and Drug Administration (FDA).

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November 21, 2018
11/21/2018- Ohio Step Therapy Reform Bill

Two critical bills for the RARE disease community are coming up for voting in both the Ohio House and Senate before the end of this year.  The bills are Ohio Senate Bill 56 and Ohio House Bill 72.

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November 14, 2018
11/14/2018 - Access to Genetic Counselor Services Act

H.R. 7083, the “Access to Genetic Counselor Services Act” 

As you may know, NSGC announced earlier in the week that Representatives Erik Paulsen (R-MN) and Dave Loebsack (D-IA) introduced H.R. 7083, legislation that would result in genetic counselor recognition by the Centers for Medicare and Medicaid Services (CMS).     

Medicare currently covers and reimburses genetic counseling and many genetic tests; however, Congress has yet to enact legislation that would recognize genetic counselors as Medicare practitioners. This bill would create that recognition, resulting in much better access to genetic counselor services and enabling genetic counselors to be reimbursed by CMS when providing these important services to Medicare beneficiaries.

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