What is the name of your organization?
RARAS
What is the name of your solution?
Acesso Raro
Provide a one-line summary or tagline for your solution.
Connecting rare disease patients with treatment options, clinical trials, and research to accelerate drug development and improve care.
In what city, town, or region is your solution team headquartered?
Ribeirão Preto, SP, Brasil
In what country is your solution team headquartered?
Brazil
What type of organization is your solution team?
Nonprofit
Film your elevator pitch.
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What specific problem are you solving?
Rare diseases affect over 400 million people globally, yet they are often overlooked in mainstream healthcare due to limited awareness, research, and access to treatments. Most rare diseases have no effective treatment, and patients face significant barriers in obtaining accurate diagnoses, participating in clinical trials, and accessing necessary medications. Many patients experience long diagnostic delays, often leading to a delayed start in treatment, while the global availability of rare disease medications remains limited and expensive. The problem is particularly severe in low- and middle-income countries, like Brazil, where access to treatments and clinical trials is even more constrained. Furthermore, recruitment for clinical trials is often slow and inefficient due to fragmented data, lack of patient awareness, and difficulty matching patients with relevant studies. Globally, rare diseases affect approximately 1 in 20 people, meaning that nearly 7% of the world’s population suffers from a rare disease. In Brazil alone, 13 million people are affected, with many facing challenges accessing effective treatment options. Our solution addresses these barriers by creating a transparent, accessible platform that connects patients with medications, trial opportunities, and research initiatives. This helps accelerate treatment development, improve patient outcomes, and foster collaboration across the rare disease ecosystem.
What is your solution?
Our solution is a digital platform designed to connect patients with rare diseases to the necessary treatments, clinical trials, and research opportunities. The platform is a comprehensive data hub for rare disease medications, providing transparent, accessible information about available treatments, clinical trial opportunities, and ongoing research efforts. It allows patients to search for medicines, register for clinical trials, and track treatment effectiveness in real-time. The platform integrates with clinical trial databases and research networks, using algorithms to match patients with relevant studies and treatment options based on their disease and health profile. Additionally, it offers secure data management to ensure patient privacy, with full compliance with global privacy regulations. The platform utilizes cloud-based technology to store and manage patient data, integrates with existing clinical trial registries, and uses machine learning to improve the matching process between patients and trials. It also includes an intuitive user interface that makes it easy for patients, researchers, and clinicians to navigate the platform and access the necessary information. By fostering collaboration between patients, researchers, and the pharmaceutical industry, our solution accelerates the development of treatments and improves patient outcomes in the rare disease space.
Who does your solution serve, and in what ways will the solution impact their lives?
Our solution serves patients with rare diseases, their families, healthcare providers, researchers, and pharmaceutical companies. Rare disease patients represent a diverse and often underserved population, with an estimated 13 million people affected in Brazil alone. These individuals face significant challenges such as delayed diagnoses, limited treatment options, lack of awareness, and difficulty accessing clinical trials. Patients often struggle to find accurate information about available treatments and face delays in enrolling in clinical trials due to fragmented data. They are frequently excluded from research efforts due to geographical and logistical barriers.
Additionally, there is a lack of comprehensive resources that connect patients, healthcare providers, and researchers in one place, hindering collaboration and slowing progress in rare disease research. Our platform will provide patients easy access to treatment options, clinical trials, and research opportunities, empowering them to participate actively in their healthcare. By facilitating data sharing, improving clinical trial recruitment, and offering transparent medication information, we will reduce treatment delays, enhance patient outcomes, and accelerate research in rare diseases. This will ultimately improve the quality of life and accelerate access to life-changing treatments for rare disease patients.
