Updates - Page 2 of 2 - Rare Coalition

Comments Submitted to Colorado PDAB on Draft Proposed Rule Concerning the Affordability Review of Prescription Drugs

A Patient-Centric Approach to Evaluate Rare Disease Treatments

Amanda Malakoff Announced as Executive Director for the Rare Disease Company Coalition

Thought Leadership

Policy Must Keep Pace with Technology if we are to Reap the Benefits of AI Drug Discovery for Rare Diseases

The Orphan Drug Tax Credit is a Proven Catalyst for Investment and Treatment Development

RDCC Supports Policy Proposals That Recognize the Potential of Rare Disease Therapies and Reinforce the Role of the Accelerated Approval Pathway

The Rare Disease Company Coalition Expresses Concern to CMS on Oregon’s Application for a Section 1115 Demonstration Waiver

RDCC Offers Endorsement of the Bipartisan BENEFIT Act in Support of Patient Engagement in Drug Development

Thought Leadership

The Case for Rare Diseases as a Public Health Priority

Our Policy Focus Areas

Thought Leadership

“One-Size-Fits-All” HTA would be a Major Setback for Rare Disease Patients

RDCC Advocates for “Newborn Screening Saves Lives Reauthorization Act of 2021” in Letter to Congressional Leaders

The Rare Disease Company Coalition Announces 2022 Executive Committee and Leadership Appointments

The Rare Disease Company Coalition Submits Comments on Oregon’s Application for a Section 1115 Demonstration Waiver

Thought Leadership

The Unique Clinical and Economic Challenges of Rare Disease Diagnosis

Cutting the Orphan Drug Tax Credit is Not Drug Pricing Reform

The Rare Disease Company Announces New Members and Continues Growth in its Inaugural Year

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

Congressional Leaders Continue to Place Politics Over Rare Disease Patients with Proposed Changes to Orphan Drug Tax Credit in Build Back Better Act

Video: The Challenges of “One-Size-Fits-All” Approaches to Healthcare Policy Reform

The Rare Disease Company Coalition Continues Growth and Announces New Members

Thought Leadership

Rightsizing the U.S. Newborn Screening System

Existing Value Frameworks to Negotiate Pricing for Rare Disease Drugs Disproportionately Impacts People Suffering from Rare Diseases

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

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

Thought Leadership

The Perils of One-Size-Fits-All Public Policy

Rare Disease Drugmakers to Congress: Don’t Gut the Accelerated Approval Pathway

Drug Makers To Congress: Reject Accelerated Approval Pay Reforms

The Rare Disease Company Coalition Urges Congress to Preserve and Reinforce Accelerated Approval Program to Enable Delivery of Therapies for Challenging Rare Diseases

Thought Leadership

Accelerated Approval Offers a Promising Roadmap for Rare Neurological Diseases

The Rare Disease Company Coalition Announces New Members

The Rare Disease Company Coalition Applauds Introduction of Cures 2.0 and Encourages Congress to Account for the Unique Circumstances in Rare Disease Treatment Development

The Rare Disease Company Coalition Announces 2021 Executive Committee

The “Rare Disease Company Coalition” Launches to Share the Unique Challenges and Promise of Rare Disease Therapy Development to Support Continued Progress and Patient Access

Rare Disease Companies Unite to Advocate for Life-Changing Therapies