Advocacy Newsletters

6/28/2019 - RDLA Rare Across America

Please consider signing up today with the RDLA (Rare Disease Legislative Advocates) to meet with U.S. Members of Congress in their district offices this summer! No prior Legislative Advocacy experience is needed! They set up the meetings for you! All you have to do is to show up! RDLA also helps out by providing you with talking points and legislative resource materials to pass out, as well as a webinar beforehand to help prepare you for the meeting. 

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6/6/2019 - NNCSS letter to Congress on the FY2020 House appropriations bill

Dup15q Alliance joined several other Neurology Patient Groups in a letter to Congress with concerns about langauge in the FY2020 House appropriations bill.

For several years, many of our organizations advocated for the creation of the National Neurological Conditions Surveillance System (NNCSS) at the Centers for Disease Control (CDC), which was passed as a part of the 21st Century Cures Act in 2016. The NNCSS was then funded in the FY2019 appropriations bill, with implementation moving forward in a limited capacity, with a goal of broadening the program in the future. Here’s more information: https://www.cdc.gov/surveillance/projects/nncss/index.html

Funding to continue implementation was included in the FY2020 House appropriations bill, but language was added to include “at least one severe neuropsychiatric disorder, such as schizophrenia” to the NNCSS. The AAN is highly concerned with this language due to the progress already being made and the differences between neurologic and neuropsychiatric disorders.

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5/23/2019 - Join Us in Supporting the Newborn Screening Saves Lives Reauthorization Act of 2019 (H.R.2507)!

The Newborn Screening Save Lives Reauthorization Act of 2019 (H.R.2507) was just introduced in the House of Representatives by Representatives Roybal-Allard, Simpson, Herrera Beutler, and Clark. Newborn screening is one of the most successful public health programs, saving thousands of babies' lives each year. About four million babies are screened every year for conditions that could cause severe disability or death without immediate intervention. 

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4/2019 - Correlation Between Gastrointestinal and Neurological Disorders Letter to the NIH

Dup15q Alliance had joined with a several other groups of genetic neurologic disorders who have comorbid Gastrointestinal issues in a letter to the National Institute of Health.

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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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