RARE ACCESS
ACTION PROJECT

RAAP is a coalition of life sciences and patient stakeholders that explores creative policy solutions to address structural issues in access and coverage. Our priority is to help ensure rare disease patients have access to the care and treatments that they need.

THE NEED
FOR ACTION

The life sciences community has created a long list of medical breakthroughs for people with rare diseases. Many additional significant advances are likely during this new decade. However, the U.S. health care system has been unable to keep pace to make these innovations widely available to patients.

ADVOCACY HIGHLIGHT

Meet Shannon Willardson and learn about her family's rare disease journey»

Creating a Win-Win for Rare Disease Patients, HCPs & Payers

As many as 30 million Americans currently live with a rare disease. The U.S. Food and Drug Administration (FDA) defines an orphan (rare) disease as a condition that affects fewer than 200,000 people nationwide. Some rare diseases have patient populations of fewer than one hundred people.

Did You Know?

Facts about rare diseases

50%  of rare disease patients are  children

There are over 7,000 known  RARE DISEASES

"Rare Disease"  is defined as a disease affecting less than  200,000 people

Initiatives

“Action” is a key component of who we are and what we do. While think tanks play important roles for advancing science, medicine and policy, the Rare Access Action Project (RAAP) focuses on specific, achievable and measurable campaigns designed to support the rare disease community and its various stakeholders.

Federal

1: Amending Medicare Part D
2: Cures 2.0
3: Inflationary Rebates

State

1: NATIONAL CONFERENCE OF STATE LEGISLATORS
2: THE REINSURANCE PROJECT
3: THE PATIENT-FOCUSED MEDICAID IMPERATIVE

Quorum

ReSOURCES

Here is a spot for All The Things You Need, aka our resources.

RAAP EVENTS

Here is a spot for All The Things You Need, aka our resources.

In The News

Accelerated Approval Delivers Hope for Rare Disease Patients

The Accelerated Approval Pathway (AAP) has delivered innovative therapies to rare disease patients for three decades. However, the recent and controversial approval by the Food and Drug...Read More

For Rare Innovation, One Size Does Not Fit All

Washington, D.C. (09-29-2021) – The Rare Access Action Project, (RAAP), released an updated study reflecting the impact to companies that develop treatments for Rare Diseases through...Read More

Comments in response to MACPAC’s recent recommendations for the 2021 Congressional report

On behalf of the Rare Access Action Project (RAAP), we appreciate the opportunity to submit the following comments in response to MACPAC’s recent recommendations for the 2021...Read More

Changes in Medicare Part D Benefit Design Can Impact Availability of Future Treatments

With almost 50 million beneficiaries enrolled in the program, the Medicare prescription drug benefit (Part D) is considered by many to be a model of a successful government insurance...Read More

Efforts to Cut Drug Prices Would Harm Rare-Disease Patients

Government policy changes sometimes have all the subtlety of a steam roller, barreling forward without sufficient regard for everything in its path. Such is the case today with proposed changes...Read More

Former Congressman Matt Salmon To Join RAAP

The Rare Access Action Project, (RAAP), announced today that former Arizona Congressman Matt Salmon will be joining RAAP as a key advisor on rare disease issues. “We are very excited to...Read More

Medicare Part D: A Sledgehammer On A Fragile Market, When A Scalpel Is Needed

When is the last time anyone heard of a government program not only working well, but also coming in under budget? Yet that is the reality of Medicare Part D, a market-driven program that...Read More

Rare Access Action Statement on HR 3

On April 22nd, 2021, the House reintroduced Elijah E. Cummings Lower Drug Costs Now Act (H.R. 3) to address the affordability of drugs and biologicals in the United States, which includes the...Read More

Opposition Letter to HR3 Price Controls in Reconciliation Package

The Rare Access Action Project (RAAP) announced results of a devastating report conducted on the impact of proposed change to Medicare D to companies that develop treatments for Rare Diseases,...Read More

Rare Disease Patients Need Access To Therapy Innovations

One lesson we’ve learned from Covid-19 is that if innovative medical solutions, therapies and vaccines are available, accessible and affordable, then hundreds of millions of lives can be...Read More

See All

GET IN TOUCH

Please fill out the form below and we will reply with two business days.

202-697-RARE (7273)
inquiries@rareaccessactionproject.com

1012 14th Street NW, Suite 500
Washington, DC 20005