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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 The Orphan Drug COVID-19 Mitigation Act
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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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Resources
02.24.22
Our Policy Focus Areas
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Thought Leadership
02.15.22
“One-Size-Fits-All” HTA would be a Major Setback for Rare Disease Patients
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News
02.07.22
RDCC Advocates for “Newborn Screening Saves Lives Reauthorization Act of 2021” in Letter to Congressional Leaders
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Press Releases
02.03.22
The Rare Disease Company Coalition Announces 2022 Executive Committee and Leadership Appointments
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Resources
01.14.22
The Rare Disease Company Coalition Submits Comments on Oregon’s Application for a Section 1115 Demonstration Waiver
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Thought Leadership
01.11.22
The Unique Clinical and Economic Challenges of Rare Disease Diagnosis
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News
12.29.21
Cutting the Orphan Drug Tax Credit is Not Drug Pricing Reform
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Press Releases
12.15.21
The Rare Disease Company Announces New Members and Continues Growth in its Inaugural Year
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Press Releases
11.17.21
Introduction of Cures 2.0 Applauded by Coalition Dedicated to Rare Disease Treatment Development with Call to Congress to Recognize Both Challenges and Opportunities in Rare Disease R&D
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Press Releases
11.03.21
Congressional Leaders Continue to Place Politics Over Rare Disease Patients with Proposed Changes to Orphan Drug Tax Credit in Build Back Better Act
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Resources
10.20.21
Video: The Challenges of “One-Size-Fits-All” Approaches to Healthcare Policy Reform
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Press Releases
10.12.21
The Rare Disease Company Coalition Continues Growth and Announces New Members
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Thought Leadership
09.28.21
Rightsizing the U.S. Newborn Screening System
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Resources
09.17.21
Existing Value Frameworks to Negotiate Pricing for Rare Disease Drugs Disproportionately Impacts People Suffering from Rare Diseases
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Press Releases
09.14.21
The Rare Disease Company Coalition Issues Statement Citing Proposed Changes to Orphan Drug Tax Credit in Build Back Better Act Would Deliver Devastating Blow to Rare Disease Patients and Companies Dedicated to Delivering Innovative Treatments for Them
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Press Releases
08.12.21
The Rare Disease Company Coalition Urgently Calls On the White House and Congress to Recognize the Unmet Needs of Rare Disease Patients as Drug Pricing Policy Proposals are Considered
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Thought Leadership
08.04.21
The Perils of One-Size-Fits-All Public Policy
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