Every year on February 28— or February 29 in leap years, the rarest day of all— the global community comes together to recognize Rare Disease Day, a movement dedicated to achieving equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its inception in 2008, Rare Disease Day has played a crucial role in uniting diverse stakeholders—patients, caregivers, healthcare professionals, researchers, policymakers, and industry representatives—to advocate for the 300 million individuals worldwide affected by rare diseases. Led by EURORDIS and over 65 national patient organization partners, this annual observance amplifies the voices of those living with rare diseases and calls for urgent action to improve their lives.
The Role of HTA in Rare Diseases
HTA plays an essential role in supporting the mission of Rare Disease Day by ensuring that innovations in healthcare—diagnostics, treatments, and therapies—are evaluated effectively for their clinical benefit, cost-effectiveness, and accessibility. Given the complexities associated with rare diseases, HTA frameworks help policymakers and healthcare systems make informed decisions that balance innovation with sustainability.
Getting Involved: HTAi Rare Diseases Interest Group
There are many ways to engage and contribute meaningfully in rare disease advocacy. HTAi actively fosters these efforts through its Rare Diseases Interest Group (RDIG), which unites experts, researchers, and patient advocates to advance the role of HTA in rare disease policy and decision-making. RDIG is dedicated to improving evaluation methodologies, promoting patient-centered approaches, and strengthening global collaboration to enhance treatment accessibility. Through ongoing research, stakeholder engagement, and advocacy, HTAi is committed to driving positive change for individuals living with rare diseases.
Throughout the year, RDIG hosts webinars, collaborates on projects, hosts presentations, and publishes papers related to rare diseases and HTA. Learn more and support RDIG’s efforts this Rare Disease Day by exploring their content.