As an advocate for patients with rare diseases you are a very important part of the legislative process. You can make the difference as you are the voices your legislators and congressmen want, or in some cases do not want to hear. Please complete the form below to take action and contact your Member of Congress

After you take action your job is not done! The final step is to share the action alert with your family, friends, co-workers and any other people that might be interested in taking action on behalf of the rare disease community.

NORD is Asking Patient Advocates to Encourage Their Senators to Save the Orphan Drug Tax Credit

NORD is encouraging patient advocates to call, email and tweet their Senators in support of the Orphan Drug Tax Credit (ODTC). Yesterday, the House passed a tax reform bill that would get rid of the ODTC, a critical incentive for orphan drug creation. These provisions are now being considered by the Senate. The ODTC allows drug manufacturers to claim a tax credit of 50 percent of the qualified costs of clinical research and drug testing of orphan drugs (drugs for diseases affecting 200,000 Americans or fewer). The ODTC is part of a package of provisions enacted in 1983 in the Orphan Drug Act (ODA) that provides incentives for drug companies to develop products for rare diseases. This legislation has been extremely successful.

Danny’s Dose is Asking MN Patient Advocates to Call Their State Legislators in Support of EMS Protocol Bills

HB972 and SF1023 are EMS Protocol Bills that support individuals with “special medical needs.” In order to preserve these bills in their current state, Danny’s Dose is encouraging advocates to call or email their legislators to voice their support. If authors change legislative language to only cover Adrenal Insufficiency, thousands of patients could be left unprotected.

 

(area code is 651)

House Bill – HB972    

Author: Rep. Clark Johnson   –  296-8634

Email:  rep.clark.johnson@house.mn

Senate Bill – SF1023 

Author: Sen. Nick Frentz   –  296-6153

Email:  sen.nick.frentz@senate.mn

Co-Authors: Sen. Julie Rosen   –  296-5713

Sen. Tony Lourey  –  296-0293

Sen. Scott Jensen  –  296-4837**

Sen. Michelle Benson  –  296-3219**

 

Click here to look up your Minnesota legislators. For questions please contact Darlene Shelton at darlene@dannysdose.com.

EveryLife Foundation Urges Advocates to Ask Their Members of Congress to Support the OPEN ACT

The EveryLife Foundation asks you to take action to support the Orphan Product Extensions Now, Accelerating Cures and Treatments (OPEN ACT, H.R. 1223 / S. 1509). The OPEN ACT could bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to repurpose therapies for the treatment of life-threatening rare diseases. EveryLife Foundation, the National Organization for Rare Disorders (NORD), Global Genes, and Genetic Alliance are among the more than 220 patient organizations support this bipartisan legislation.

For further information on the OPEN ACT, click here.

 

Call on Your Members of Congress to Attend the November Rare Disease Congressional Caucus Briefing!

On November 15th, the Rare Disease Congressional Caucus will host a briefing on “Diagnostic Challenges for Rare Disease Patients.” This event will brief Members of Congress and staff on challenges to diagnosing rare disease, emerging technologies and possible policy solutions. Rare disease patients often have to see multiple doctors over many years before they receive a diagnosis.

You can find out more about the event by CLICKING HERE or contact Sabah at the EveryLife Foundation at SBhatnagar@everylifefoundation.

Please take a minute to phone your legislators and urge them to send staff to the event!

NORD is Encouraging Patient Advocates to Call or Email Their Members of Congress to Ask Them Not to Repeal the Orphan Drug Tax Credit

Lawmakers are currently considering tax reform legislation that could repeal an incentive for developing orphan drugs: the Orphan Drug Tax Credit (ODTC). NORD is encouraging advocates to call or email their Members of Congress to ask them not to repeal the ODTC. Last month, the organization circulated a letter from patient organizations to Congress highlighting the importance of the ODTC.

Click here to call your Member of Congress.

Click here to email your Member of Congress.

The Epilepsy Foundation Asks Patient Advocates to Write to Their Legislators to Oppose the ADA Education and Reform Act of 2017

The Epilepsy Foundation is asking patient advocates to write to their legislators to encourage them to oppose the Americans with Disabilities Act (ADA) Education and Reform Act of 2017 (HR 620). According to the Foundation, the bill would weaken protections for people living with disabilities by making it easier for businesses to avoid complying with the accessibility requirements of the ADA. Click here to take action.

Ask Your Members of Congress to Join the Rare Disease Congressional Caucus

Help us strengthen the rare disease community’s voice on Capitol Hill! The Rare Disease Congressional Caucus is a forum for Members of Congress to voice constituent concerns, collaborate on ideas, facilitate conversations between the medical and patient community and build support for legislation that will improve the lives of people with rare diseases.

Click here to invite YOUR legislators to join the bipartisan Caucus!

NORD is Encouraging Advocates to Ask Their Senators to Oppose the “Graham-Cassidy” Bill

The Senate is currently considering an Affordable Care Act (ACA) replacement bill co-sponsored by Senators Bill Cassidy (R-LA) and Lindsey Graham (R-SC). The National Organization for Rare Disorders (NORD) is asking patient advocates to email or call their Senators to oppose this “Graham-Cassidy” bill. The organization has outlined how this legislation could be detrimental for rare disease patients in their new statement (click to read). According to the organization, provisions allowing states to opt out of key coverage protections for individuals with pre-existing conditions would be especially concerning.

Click here to find out how to take action.

Call on Your Members of Congress to Attend the September Rare Disease Congressional Caucus Briefing!

On September 13th, the Rare Disease Congressional Caucus will host a briefing on “Curing Rare Disease: Policy and Regulation Needed for Emerging Technology.” This event will brief Members of Congress and staff on the need for policy and regulation that does not only keep pace in this new era of innovation, but also ensures that patients benefit the application of new technologies to safe and effective treatments.

You can find out more about the event by CLICKING HERE or contact Sabah at the EveryLife Foundation at SBhatnagar@everylifefoundation.

SYNGAP Asks Patient Advocates to Sign Letter on Quality-Based Physician Reimbursement

When Congress replaced the Sustainable Growth Rate (SGR) formula for how clinicians got their annual raises and bonuses (and penalties), they replaced it with a system where clinicians had to meet certain quality measures, make improvements to their practices, use technology to aid the patient experience, etc. Now kicking off it’s second year of this very different approach to physician payments, CMS is asking for suggestions. In this letter, SYNGAP asks CMS to recognize that clinicians will not always have quality measures for rare and ultra rare diseases, their costs may be greater to treat our patients, and practice improvements or technology adoption for just a few patients may be more difficult to implement. The system should not fail those clinicians who are treating ultra rare patients.  SYNGAP recommends some common sense changes for CMS to adopt related to how clinicians can still get their raises and bonuses when treating rare and ultra rare patients.

Click here to see sign-on letter.

Please email Monica Weldon at monicaw@bridgesyngap.org if you have questions and/or would like to sign this letter by August 20.