• Advocacy Masterclass
  • Patient Storybook
0 Items
Patients Rising Now
  • Home
  • About
    • About Us
    • Who We Are
    • Partners and Coalitions
    • Corporate Members
    • Financials
  • News & Insights
  • Positions
    • Legislative Positions
    • Positions
    • Policy Supported
  • Take Action
    • We The Patients Fly-in 2023
    • Patient StoryBook
    • What You Can Do
    • Patient Action Center
    • Advocacy Masterclass
  • Donate
Select Page
  • Home
  • About
    • About Us
    • Who We Are
    • Partners and Coalitions
    • Corporate Members
    • Financials
  • News & Insights
  • Positions
    • Legislative Positions
    • Positions
    • Policy Supported
  • Take Action
    • We The Patients Fly-in 2023
    • Patient StoryBook
    • What You Can Do
    • Patient Action Center
    • Advocacy Masterclass
  • Donate

Patients Rising Now Calls on Lawmakers to Create Federal Rare Disease Program

Jul 20, 2022 | Featured, Letters Submitted | Rare Disease

We sent a letter to members of the House and Senate Appropriations Committees regarding FY23 funding. The House bills that fund HHS and FDA both established double digit percentage increases in funding; we thanked House lawmakers for their continued support of these vital programs and encouraged Senate lawmakers to follow their colleagues’ lead. We also took the opportunity to call for the creation of a Rare Disease Program. In the HHS bill, there were provisions that requested more attention be given to rare disease research and funding, but made no funds available. Rare and ultra-rare disease patients could see a world of difference if such a program were to be established.
Be sure to give the letter a look!
facebookShare on Facebook
TwitterTweet
FollowFollow us
PinterestSave

Tags: Rare Disease

Categories

  • Access
  • Advocacy
  • California
  • Comment Letters
  • Copay Accumulators
  • Copay Assistance
  • COVID-19
  • Drug Costs
  • FDA
  • Featured
  • Featured Action
  • Federal Issues
  • Health Insurance
  • Health Policy
  • ICER
  • Illinois
  • Issues
  • Letters Submitted
  • Letters Supported
  • Massachusetts
  • Medicaid
  • Medicare
  • Medicare Part D
  • News
  • Op-Ed
  • Out of Pocket Costs
  • Pharmacy Benefit Managers
  • Podcast
  • Prescription Drugs
  • Press Releases
  • Public Statement
  • QALY
  • State Issues
  • Statements
  • Step Therapy
  • Surprise Billing
  • Uncategorized
  • Value Based Insurance Design
  • Value Frameworks
  • Virtual Advocacy Chat

Tags

21st Century Cures Act 340B Access to Care Advocacy Alzheimer's Biden Administration biosimilars Cancer cms Copay Accumulators copay assistance COVID-19 Vaccine drug costs Drug Manufacturing Drug Pricing drug rebate fail first FDA Gene Therapies H.R.3 Health Insurance hospital bills HR 3708 hsa ICER Insurance design Joe Biden medicare Part B medicare part D Mental Health Nonmedical Switching open enrollment Out of Pocket Costs PBM PBMs pharmacy benefit managers Price Transparency Prior Authorization QALY Rare Disease Right to Repair Step Therapy Telehealth transparency Value Framework

Recent Posts

  • Out-of-the-Box Thinking Needed to Boost Healthcare Professional Workforce, Improve Access 
  • Patient Group Exposes Vision Benefit Manager Abuses in New Campaign
  • Wilcox: A Bipartisan Victory for Patients to Ban Discriminatory Metrics Congressional Subcommittee Agrees: Patient Lives are WORTH IT 
  • Patients Rising Now Submits Comments on Patient Rights to United States Patent and Trademark Office
  • New Harris Poll:  FDA Should Regulate All Medical Device Service and Repair

Get Updates In Your Inbox

Sign up for updates about our patient education, support and advocacy programs and initiatives.

YES, KEEP ME UPDATED

Patients Rising Now

We are a 501c4 group dedicated to demanding transparency in health care.  We are part of the Patients Rising suite of programs and services.

700 12th St. NW 700, Suite 700
Washington, DC 20005
202-679-8223

 

  • Privacy Policy
  • Sponsor Opportunities
  • Patients Rising
  • Patient Action Center
  • Facebook
  • Twitter
  • Instagram
All rights reserved. © 2023 Patients Rising Now