Updates - Rare Coalition

RDCC Proposes Policy Solutions to Remove Barriers for Rare Disease Patients Seeking Treatment Options and Increase Equity of Access

RDCC Urges Congress to Reject Proposals that Undermine the Intent of Accelerated Approval for Rare Disease Patients

RDCC Sends Letter of Support for Four Rare Disease Bills to Minnesota State Legislators and Expresses Concern for Fifth Bill that Threatens Drug Development

Learn more about how the Orphan Drug Act enables researchers to discover breakthrough cures for rare diseases

RDCC Submits Comments on Equal Employment Opportunity Commission’s FY 2022-2026 Draft Strategic Plan

Join RDCC in Support of “Leo’s Law”

Arbitrary Price Controls have a Negative, Disproportionate Impact on Rare Disease Treatment Development

RDCC Urges Swift Action to Reauthorize PDUFA in Letter to Congressional Leaders

Understanding and Modernizing Newborn Screening

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

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

Our Policy Focus Areas

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

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

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