The Alliance for Patient Access, a network of policy-minded healthcare providers, advocates for patient-centered care and bridges the gap between rare disease patients and timely, uniquely tailored treatments.
Accessing the right care shouldn’t be rare. But for many rare disease patients, getting the right treatment can be a difficult process.
A lack of awareness about rare diseases can make it challenging to receive an accurate diagnosis. Limited research, innovation, and funding may mean there are no treatments targeted toward a specific condition. And in cases where treatments are available, uniform care models, limited research, and utilization management tactics like prior authorization and step therapy can prevent patients from accessing what they need.
Rare disease patients need timely treatment that’s tailored to their unique conditions, needs, and preferences.
That’s where the Alliance for Patient Access’ Rare Diseases Working Group comes in. This network of policy-minded healthcare providers advocates for patient-centered care.
Combining access, awareness, and care
To promote patient-centered care for rare disease patients, the working group participates in advocacy initiatives to encourage better policy at the state, federal, or health plan level. It also entails developing educational resources, which raise awareness about rare diseases and ensure that the clinician’s perspective informs policy discussions.
Through initiatives on rare conditions like amyloidosis and IgG4-RD, the Alliance for Patient Access’ Rare Diseases Working Group helps patients, providers, and caregivers better understand the rare condition they experience.
The term “rare” may make these diseases seem uncommon. But between 25 and 30 million Americans have a rare disease. Rare is everywhere. The Rare Disease Working Group works to make access, awareness, and personalized care as common as the diseases that patients face.
To learn more, contact Elizabeth Simpson at [email protected].