30 Million Patients Speak with 1 Voice: We Need Innovation

The patient’s voice must be at the center of health care.

We emphasize that principle in everything that we do because we know it’s key to delivering the necessary reforms to expand access, eliminate barriers and encourage innovation.

The power of the patient’s voice was on full display recently with Rare Disease Day, when millions of patients from across the globe spoke with one voice. What’s considered a rare disease? Diseases are classified as rare when they affect fewer than 200,000 patients. Collectively, the rare disease community includes more than 30 million patients in the United States.

Although the science and medicine for treating each disease may be unique, the policy challenges are often the same across rare disease communities. Patients living with rare diseases need greater investment in research, streamlined pathways for advancing innovation and improved access to potentially life-saving treatments. For more insight on Rare Disease Day, check out Patients Rising contributor, Jim Sliney, Jr.’s piece on “The Challenges and Hopes of Living with a Rare Disease.”

Many patients want to speak up, but don’t know how to get started. Not to worry, our all-star team of patient bloggers are helping you find your voice. Patient advocate Charis shares “14 Ways to Become a Patient Advocate.” We’re also proud to introduce Diane Talbert, who will be a regular contributor writing on her experiences of living with psoriasis and psoriatic arthritis.

After reading posts from these inspiring women, we know you’ll want to join us in Boston on March 23rd for Voices of Value Speak Up: Spotlight Arthritis, a comprehensive look at the treatment access challenges facing arthritis patients.

Of course, before we can achieve patient-centered health care, we need to clear the smokescreen that habitually surrounds the current system. In his latest piece for The Huffington Post, our policy director Jonathan Wilcox explains how pharmacy benefit managers, or PBMs are increasingly involved in the most important part of the patient experience – while at the same time increasingly funded by money that is intended for patient relief.

As always, we’re grateful for your support and honored to join you in the fight for access to care, continual innovation, sensible regulatory reform and all the best ways to amplify the patient voice.

Watch: The Importance of the Patient Voice

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.

The latest about patient advocacy

Join our Email List

Get notified about new stories and resources to empower patients and caregivers.