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09.12.24
Rare Disease Biotech Innovators Urge Timely Reauthorization of Rare Pediatric Disease Priority Review Voucher (PRV) Program
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News
08.02.24
RDCC’s Response to 21st Century Cures Act and Cures 2.0 Request for Information
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Press Releases
07.29.24
Rare Disease Company Coalition Statement Applauding FDA’s Establishment of Rare Disease Innovation Hub
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Reports
05.30.24
RDCC Delivers New Findings on Value and Impact of the Rare Pediatric Disease PRV Program
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Press Releases
05.22.24
Stacey Frisk Named as New Executive Director of the Rare Disease Company Coalition
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Resources
05.22.24
RDCC presents 2024 Outlook
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Press Releases
04.08.24
RDCC Endorses Bipartisan Accelerating Kids’ Access to Care Act
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Thought Leadership
03.04.24
Rare Disease Is Not Rare: Reflections on Rare Disease Week 2024
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Press Releases
02.21.24
RDCC Supports Bipartisan Effort to Reauthorize Rare Pediatric Disease Priority Review Voucher Program
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News
01.25.24
RDCC Submits Response to Senator Cassidy’s Request for Information on “Improving Americans’ Access to Gene Therapies”
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News
11.15.23
ORPHAN Cures Act Enables Rare Disease Companies to Pursue Promising Research to Uncover More Treatment Options
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Press Releases
11.15.23
Graham Owens Announced as Executive Director of the Rare Disease Company Coalition
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Press Releases
10.26.23
Rare Disease Company Coalition Urges Congressional Action in Capitol Hill Briefing on the Risks of Rare Disease Drug Development
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Resources
10.25.23
New White Paper Examines the Impact of Policy Uncertainty on Investment in Rare Disease Drug Development
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Thought Leadership
09.22.23
Project GUARDIAN: Pioneering Genomic Newborn Screening for Rare Genetic Diseases
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Reports
08.31.23
RDCC Delivers New Set of Policy Recommendations to Promote More Streamlined and Effective Early Diagnosis of Rare Diseases
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Press Releases
06.30.23
Revised Inflation Reduction Act Guidance Increases Risk of Rare Disease Drug Development
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Thought Leadership
06.06.23
How QALY Discriminates Against People Living with Rare Diseases
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Reports
05.11.23
RDCC Proposes Policy Solutions to Remove Barriers for Rare Disease Patients Seeking Treatment Options and Increase Equity of Access
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Resources
03.22.23
RDCC Urges Congress to Reject Proposals that Undermine the Intent of Accelerated Approval for Rare Disease Patients
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Resources
03.14.23
RDCC Sends Letter of Support for Four Rare Disease Bills to Minnesota State Legislators and Expresses Concern for Fifth Bill that Threatens Drug Development
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Press Releases
03.03.23
RDCC Applauds Reintroduction of Cameron’s Law and the Rare Disease Clinical Trial Pandemic Disruption Act
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News
02.28.23
RDCC Participates in FDA Rare Disease Day 2023 Public Meeting
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Press Releases
02.16.23
RDCC Responds to New HHS Payment Models Targeting Accelerated Approval Therapies
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News
01.20.23
Hopes, Fears for Orphan Drug Act
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Thought Leadership
01.18.23
Congress Can Unite to Help Kids Living with Rare Diseases
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Thought Leadership
01.13.23
Celebrating 40 Years of the Orphan Drug Act: Renewing a Commitment to Advancing Innovation for Rare Disease Patients
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Resources
01.09.23
Learn more about how the Orphan Drug Act enables researchers to discover breakthrough cures for rare diseases
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Press Releases
01.03.23
Recognizing the 40th Anniversary of the Orphan Drug Act, The Rare Disease Company Coalition Calls on Policymakers to Renew Commitment to Advancing Innovation for Rare Disease Patients
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News
12.08.22
Vital Health Podcast: The Accelerated Approval Pathway is Vital for Rare Disease Treatments
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Resources
12.06.22
RDCC Submits Comments on Equal Employment Opportunity Commission’s FY 2022-2026 Draft Strategic Plan
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Resources
12.06.22
Join RDCC in Support of “Leo’s Law”
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News
11.28.22
RARECast Podcast: Examining the Legislative Landscape for Rare Disease Drug Development
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News
11.22.22
Groups Hope New Congress Will Pass Bipartisan Bills Centered on Rare Diseases
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News
11.15.22
New Study Finds Patient Access to Rare Disease Drugs Would Decline Sharply Under Proposals to Limit Medicaid Reimbursements
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Resources
11.03.22
Arbitrary Price Controls have a Negative, Disproportionate Impact on Rare Disease Treatment Development
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Thought Leadership
10.16.22
The State of the Biotech Industry
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News
10.12.22
RDCC Joins in Call for Repeal of R&D Tax Policy that Hurts Rare Disease Innovation
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Resources
09.15.22
RDCC Urges Swift Action to Reauthorize PDUFA in Letter to Congressional Leaders
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News
09.12.22
RDCC Joins in Support of “Newborn Screening Saves Lives Reauthorization Act of 2021” in Letter to Senate Leaders
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Resources
09.01.22
Understanding and Modernizing Newborn Screening
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Resources
08.24.22
Comments Submitted to Colorado PDAB on Draft Proposed Rule Concerning the Affordability Review of Prescription Drugs
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Resources
06.06.22
A Patient-Centric Approach to Evaluate Rare Disease Treatments
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Press Releases
06.06.22
Amanda Malakoff Announced as Executive Director for the Rare Disease Company Coalition
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Thought Leadership
05.26.22
Policy Must Keep Pace with Technology if we are to Reap the Benefits of AI Drug Discovery for Rare Diseases
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Resources
05.16.22
The Orphan Drug Tax Credit is a Proven Catalyst for Investment and Treatment Development
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Resources
04.28.22
RDCC Supports Policy Proposals That Recognize the Potential of Rare Disease Therapies and Reinforce the Role of the Accelerated Approval Pathway
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Resources
04.14.22
The Rare Disease Company Coalition Expresses Concern to CMS on Oregon’s Application for a Section 1115 Demonstration Waiver
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Resources
03.30.22
RDCC Offers Endorsement of the Bipartisan BENEFIT Act in Support of Patient Engagement in Drug Development
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Thought Leadership
03.15.22
The Case for Rare Diseases as a Public Health Priority
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