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.

The National Leiomyosarcoma Foundation is Asking Patient Advocates to Call Their Members of Congress in Support of Resolution Establishing National Sarcoma Awareness Month

The National Leiomyosarcoma Foundation is asking patient advocates to call their Members of Congress in support of a resolution to create a National Sarcoma Awareness Month and a National Leiomyosarcoma Awareness Day in 2018.  A National Sarcoma Awareness Month for JULY would allow awareness and support on a national scale.

Leiomyosarcoma Awareness Day-July 15 was granted by Congress in 2016. This year, the focus and hope is for a National Sarcoma Awareness Month of July and a National and Leiomyosarcoma Awareness Day to follow for July 15, 2018. Click here to read a letter from the National Leiomyosarcoma Foundation along with the resolution. 

1. Sarcoma is a designated rare cancer because it represents 1% of all cancers.
2. There are between 50 – 70 sarcoma subtypes. Some researchers have even indicated possibly
Up to 100 lately.
3. Sarcomas know no age boundaries – children, young adults, older adults are diagnosed
4. It is expected that the increase in sarcoma diagnoses will continue to rise annually.
5. Sarcoma is difficult to treat and the life expectancy after diagnosis is short.
6. For example, for Leiomyosarcoma, there is a 64% survival rate of up to 5 years.
For Leiomyosarcoma, there is no immunotherapy that is working yet.
7. Since sarcoma is a rare cancer, it is important for the patient population to be
heard, and the disease better understood throughout communities.
8. No longer having a ” rare voice” in the cancer landscape can help spotlight sarcoma and its
Many subtypes – for national awareness, support, and elevated funding to accelerate treatment
options that can advance survival rates.
9. The results of this are evident in the common cancers – breast cancer especially.
10. Rare Cancer would benefit from the same level of involvement in awareness, support, funding.

 

Children’s Cause Cancer Advocacy is Encouraging Patients to Ask Their Members of Congress to Support the STAR Act

The Childhood Cancer STAR Act is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors. Children’s Cause Cancer Advocacy is asking advocates to write to their Members of Congress to voice their support.

Click here to take action.

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.

 

The EveryLife Foundation, NORD and Global Genes are Asking Patient Advocates to Tell Congress to Save Orphan Drugs by GIVING THANKS for Rare Disease Treatments

The Orphan Drug Tax Credit (ODTC) is a key provision of the Orphan Drug Act, and promotes research spending on rare diseases by lowering development costs for manufacturers – but this is in jeopardy: the tax reform bill passed in November by the House would eliminate the credit altogether, and the Senate bill, which passed earlier this month, cut it nearly in half.

The EveryLife Foundation for Rare Diseases, NORD and Global Genes feel that without the Orphan Drug Tax Credit, investment in therapies for rare disease patients is at risk!  Before the Orphan Drug Act, manufacturers were often hesitant to invest in developing new treatments for rare diseases because the small patient population made it difficult to recover development costs.

TAKE ACTION NOW to preserve the ODTC by telling Congress why YOU are grateful for it!  Use #RareGratitude and put it to good use!

Here are 4 things you can do to show your #RareGratitude.  It only takes a few minutes to help 30 million Americans waiting for treatments to be developed.

  • Tweet your #RareGratitude!
    • Get inspired with the sample posts below. Tag your Senator and Representative by checking their username here.  Ask your followers to RT!
  • Facebook
    • Post a picture of yourself or your family holding this sign to show your #RareGratitude! Tag your Senator and Representative by checking their username here.
    • Visit your Senator’s and Rep’s pages by checking their username here, and post in the Comments section using a sample post below.
    • Ask your friends and family to do the same, or to share your post.
  • Email your Senator and Representative
  • Call your Senator and Representative

SAMPLE POSTS: 

  • Orphan Drugs saved my life. Now we have to save the Orphan Drug Tax Credit for the 95% who don’t have treatments yet. #RareGratitude #SaveOrphanDrugs
  • #SaveOrphanDrugs for 30M Americans w/ #rarediseases who rely on future development of #OrphanDrugs: org/saveorphandrugs #RareGratitude
  • 30M Americans are counting on the Orphan Drug Tax Credit to save their lives. #RareGratitude #SaveOrphanDrugs
  • I’m giving thanks for the 600 new treatments developed because of the Orphan Drug Tax Credit. #RareGratitude. Preserve the ODTC for the 6,400 still needed! #SaveOrphanDrugs
  • The #OrphanDrug Tax Credit gives me hope for a future treatment for my #raredisease. #RareGratitude. Please #SaveOrphanDrugs {insert picture of yourself}
  • I am a #raredisease patient who does not have a treatment. I’m giving thanks for the #OrphanDrug Tax Credit, because it gives me hope for the future. #RareGratitude. Please #SaveOrphanDrugs!
  • #RareGratitude means giving thanks this holiday for #OrphanDrugs. Please RT & take action to #SaveOrphanDrugs. Millions of #raredisease patients rely on it for the hope of a future treatment! Call Congress using org/saveorphandrugs

 

Every action showing #RareGratitude helps #SaveOrphanDrugs and millions of lives!  THANK YOU!

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.

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 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.

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!