Sequestration poses significant risk to the funding NIH and FDA receives – agencies which are critical to advancing our understanding of and treatments for rare diseases. Help end sequestration and the threat of cutting billions of dollars from our most crucial facilities by getting your organization to sign-on to the letter linked below: Read more
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.
From The California Healthcare Institute (CHI): We are working to protect critical funding for the drug review divisions at FDA, which are under threat of budget cuts that could greatly hamper the drug approval process. Organizations are being asked to endorse legislation, FDA SOS Act HR 1078, to protect these vital funds.
After hundreds of Hill meetings, emails and calls to Congress, we are seeing the true impact of Rare Disease Patient Advocacy on the 21st Century Cures Legislation. The latest draft released this week includes many priorities for the rare disease community – including 3 out of the 4 pieces of legislation advocates lobbied for during Rare Disease Week 2015:
- HR 971, Orphan Product Extensions Now Accelerating Cures and Treatments Act(OPEN ACT)
- HR 292, Advancing Research for Neurological Diseases Act
- HR 909, Compassionate use Reform & Enhancement (CURE) Act
Other important provisions benefiting the rare disease community include, making the Pediatric Priority Review voucher program permanent, the NIH Innovation Fund, language on Precision Medicine for Orphan diseases, and patient focused drug development.
What Does 21st Century Cures mean to you?
Rare disease groups are circulating an organizational sign-on letter to thank Chairman Upton (R-MI) and Representative DeGette (D-CO) for leading the 21st Century Cures Initiative, and for incorporating the patient voice. To date, over 40 organizations have signed, including: the EveryLife Foundation, Global Genes, Parent Project Muscular Dystrophy, and the Sarcoma Foundation of America. View the sign-on letter here and email email@example.com to get signed-on. Please share with your networks so we can send a strong message to Congress!
Genetic Alliance is circulating a sign-on opportunity for groups looking to protect the Genetic Nondiscrimination Act and the Americans with Disabilities Act. Recently introduced legislation seeks to exempt employer-based wellness programs from GINA and the ADA. This could allow employers to inquire about employees’ private genetic information or medical information unrelated to their ability to do their jobs, and penalize employees who choose to keep that information private. Click here to view the full letter and to sign-on.
Research!America has issued an action alert on behalf of health research funding. Annually, members of Congress have the opportunity to influence the appropriations process by submitting their funding priorities to appropriators. Now is the time to ask your representatives in the House and Senate to champion increased funding for medical and health research in the fiscal year 2016.
Parent Project Muscular Dystrophy (PPMD) is taking the lead on strengthening the voice of the patient throughout the drug and larger medical product development process. They are doing this by urging congress to add transparency requirements in upcoming 21st Century Cures Legislation.
PPMD has written a sign-on letter to urge that a provision known as the Patient-Focused Impact Assessment Act (PFIA) be included in 21st Century Cures draft legislation when released in early 2015.
Read the letter here: PFIA Sign On Letter
If you have any questions, or to sign-on please feel free to contact PPMD or Annie Kennedy with Parent Project Muscular Dystrophy firstname.lastname@example.org
Sequestration is upon us again as the temporary and partial relief that Chairman Ryan and Chairman Murray negotiated in the Bipartisan Budget Act expires at the end of FY 2015. With the very real threat of the return of these cuts full-bore in the upcoming FY 2016 budget cycle absent congressional action, it is time for our community to unite again to protect funding for federal programs that keep Americans safe, healthy, and secure.
Sequestration could further cut funding to NIH and FDA – agencies which are critical to advancing our understanding of and treatments for rare diseases.
Below are the text of the letter and instructions to sign on. The letter is also available online here. Due to the large number of signatures, we WILL NOT be accepting any edits. Organizations must sign on to the letter “as is.”
DEADLINE is January 29, 2015
The Huntington’s Disease Society of America is asking advocates to contact their Members of Congress to expedite Social Security Disability Insurance for patients upon diagnosis.
Huntington’s Disease is a rare, fatal, genetic neurodegenerative disease that progressively causes total physical and mental deterioration during an individual’s prime working years. Every individual with HD will ultimately lose the ability to live independently.