The rare disease landscape is changing rapidly. Patients are vital partners in shaping policy, supporting research and drug development. Find the latest tools and resources to navigate the road ahead.
As a rare disease caregiver, your daily experiences and challenges are complex and unique. Often an expert in your patient's care, you need the latest information and support geared to your situation.
Individual advocates and patient organizations are building networks, funding research and even starting companies. The resources you'll find here will equip you to take the next steps in advocacy.
The rare disease community needs your support. Whether you help raise awareness, take action in your community or donate much-needed funds, you can discover new ways to get involved.