- Enable patients to share and access data more easily
- Allow for further patient investigation into their rare disease
- Access to global data will allow for the more rapid advancement of research into each disease state
- Aids in building more accurate tools to speed the time to diagnosis
- Help patients identify if they are appropriate candidates for therapy
- Link symptoms to flag to patients and doctors to consider a rare disease diagnosis or off-label treatment
- Avoid incorrect diagnoses while reducing time to diagnosis as well as patient costs
Rare72 is an initiative designed to amplify the patient and caregiver voices in the rare disease community while compiling and evaluating all available resources in the disease state space. We aim to identify what’s working as well as where there are gaps and opportunities for collaboration. The Rare72 model was created to bolster diversity and inclusion on a global scale while ensuring equitable access to diagnosis resources.
We know that it can be a challenge to locate information and resources in the rare disease community. Patients and caregivers often turn to networking to find information on their condition. The problem with networking is that sometimes it’s a challenge for patients and caregivers to determine which information and resources are credible and helpful.
The Rare72 model provides a snapshot of the current state of a rare disease with respect to available resources and information.
Those resources are shared by stakeholders over a 72-hour cycle, then evaluated by leading experts in the disease state. A final report is then released via My City Med and revisited annually for necessary updates.
Our goal is to direct patients, caregivers, and other stakeholders to credible resources designed to help them manage their diagnosis.