Updates - Rare Coalition

RDCC Applauds Bipartisan Effort to Reauthorize Rare Pediatric Disease Priority Review Voucher Program

News

12.18.24

Rare Disease Company Coalition (RDCC) Urges Passage of Continuing Resolution to Reauthorize Rare Pediatric Disease Priority Review Voucher Program

News

11.04.24

RDCC Comments on Advancing Rare Disease Therapies Through a FDA Rare Disease Innovation Hub

News

09.12.24

Rare Disease Biotech Innovators Urge Timely Reauthorization of Rare Pediatric Disease Priority Review Voucher (PRV) Program

News

08.02.24

RDCC’s Response to 21st Century Cures Act and Cures 2.0 Request for Information

Press Releases

07.29.24

Rare Disease Company Coalition Statement Applauding FDA’s Establishment of Rare Disease Innovation Hub

Press Releases

05.22.24

Stacey Frisk Named as New Executive Director of the Rare Disease Company Coalition

Press Releases

04.08.24

RDCC Endorses Bipartisan Accelerating Kids’ Access to Care Act

Press Releases

02.21.24

RDCC Supports Bipartisan Effort to Reauthorize Rare Pediatric Disease Priority Review Voucher Program

News

01.25.24

RDCC Submits Response to Senator Cassidy’s Request for Information on “Improving Americans’ Access to Gene Therapies”

News

11.15.23

ORPHAN Cures Act Enables Rare Disease Companies to Pursue Promising Research to Uncover More Treatment Options

Press Releases

11.15.23

Graham Owens Announced as Executive Director of the Rare Disease Company Coalition

Press Releases

10.26.23

Rare Disease Company Coalition Urges Congressional Action in Capitol Hill Briefing on the Risks of Rare Disease Drug Development

Press Releases

06.30.23

Revised Inflation Reduction Act Guidance Increases Risk of Rare Disease Drug Development

Press Releases

03.03.23

RDCC Applauds Reintroduction of Cameron’s Law and the Rare Disease Clinical Trial Pandemic Disruption Act

Press Releases

02.16.23

RDCC Responds to New HHS Payment Models Targeting Accelerated Approval Therapies

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

Press Releases

06.06.22

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

Press Releases

02.03.22

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

Press Releases

12.15.21

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

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

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

Press Releases

10.12.21

The Rare Disease Company Coalition Continues Growth and Announces New Members

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

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

Press Releases

07.29.21

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

Press Releases

06.30.21

The Rare Disease Company Coalition Announces New Members

Press Releases

06.22.21

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

Press Releases

06.07.21

The Rare Disease Company Coalition Announces 2021 Executive Committee

Press Releases

05.13.21

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

RDCC Calls on Congress to Maintain Vital ORPHAN Cures Act in Final Reconciliation Package

RDCC Applauds Senate Introduction of ORPHAN Cures Act

RDCC Supports Bipartisan Introduction of Cameron’s Law

RDCC Applauds Bipartisan Effort to Reauthorize Rare Pediatric Disease Priority Review Voucher Program

Rare Disease Company Coalition (RDCC) Urges Passage of Continuing Resolution to Reauthorize Rare Pediatric Disease Priority Review Voucher Program

RDCC Comments on Advancing Rare Disease Therapies Through a FDA Rare Disease Innovation Hub

Rare Disease Biotech Innovators Urge Timely Reauthorization of Rare Pediatric Disease Priority Review Voucher (PRV) Program

RDCC’s Response to 21st Century Cures Act and Cures 2.0 Request for Information

Rare Disease Company Coalition Statement Applauding FDA’s Establishment of Rare Disease Innovation Hub

Stacey Frisk Named as New Executive Director of the Rare Disease Company Coalition

RDCC Endorses Bipartisan Accelerating Kids’ Access to Care Act

RDCC Supports Bipartisan Effort to Reauthorize Rare Pediatric Disease Priority Review Voucher Program

RDCC Submits Response to Senator Cassidy’s Request for Information on “Improving Americans’ Access to Gene Therapies”

ORPHAN Cures Act Enables Rare Disease Companies to Pursue Promising Research to Uncover More Treatment Options

Graham Owens Announced as Executive Director of the Rare Disease Company Coalition

Rare Disease Company Coalition Urges Congressional Action in Capitol Hill Briefing on the Risks of Rare Disease Drug Development

Revised Inflation Reduction Act Guidance Increases Risk of Rare Disease Drug Development

RDCC Applauds Reintroduction of Cameron’s Law and the Rare Disease Clinical Trial Pandemic Disruption Act

RDCC Responds to New HHS Payment Models Targeting Accelerated Approval Therapies

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

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

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

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

The Rare Disease Company Coalition Continues Growth and Announces New Members

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

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