About TX Rare
TX RARE is devoted to education and advocacy that brings awareness to the needs of Texans living with rare diseases. Texas rare disease patients need improved access to treatments and services to improve their lives.
Rare Disease Patients
More than 2.8 million Texans are directly affected by a rare disease.
• 1 in 10 Texans has a rare disease.
• 95% of the 7,000 rare diseases lack an approved
• 1 in 20 children in Texas has a rare disease.
• 30% of children with rare diseases will not survive to
their 5th birthday.
• Every childhood cancer is a rare disease.
Although the population within individual rare diseases is small, the overall rare disease population is large and has surpassed 2.8 million patients in Texas. Rare diseases vary, but rare disease patients share many unmet needs including an improved diagnostic process, access to medical services and rare disease therapies, and a platform to share their concerns about their rare diseases, and the issues that impact their lives.
Bringing Together Rare
TX RARE recognizes all stakeholders are important in improving access to rare disease therapies and services. We work to bring stakeholders together in our education and advocacy efforts.
Stakeholders in the rare disease community include:
• Patient Advocates & Patient Organizations
• Medical Service Providers
• Pharmaceutical & Biotech Companies
• Healthcare Payors
• Regulatory Agencies
• Academic Institutions
• Pharmacies, Specialty Pharmacies, & Pharmacy Benefit
• Consultants & Service Providers to the Life Sciences
Meet Texas Rare
TX RARE will hold regular meetups throughout Texas for rare disease stakeholders to discuss issues that impact the rare disease community. Our goal is that these discussions will inspire action that improves access to rare disease treatments and services for the rare disease community.
Meetup locations include:
• San Antonio
We look forward to meeting you at an upcoming meetup! Together we can improve access to treatments and services for Texas rare disease patients.