We are taught to advocate for our careers and our human and civil rights.

We are accustomed to hiring lawyers to advocate on our behalf when we have a dispute.

We are not taught to advocate for our health.

Rare Disease Advocacy is aiming to change that by being:

• Patient-led
• Patient, caregiver, and healthcare professional-informed
• Partnership-powered

Here’s how you can partner with us:

Collaborate
Help to shape our awareness and education campaigns, including how we use our study findings and develop free resources for patients, caregivers, and healthcare professionals.

Build
Join in creating a vibrant network that ends the isolation rare disease patients and caregivers may feel. Connect with peers for support and knowledge sharing.

Access
Tap into a diverse community of rare disease patients and caregivers to gain deeper insight into their needs. We can help you develop better solutions for them and improve their awareness of your products and services.