Patient
Advocacy +
Engagement

We listen with intention. Act with empathy. And deliver with impact.


We embed ourselves deeply and personally within the rare disease community we are serving. We aim to listen with intention, act with empathy, and support efforts that lead to meaningful impact. Here’s how we put that into practice:

  • Provide strategic funding to nonprofit foundations to help them fulfill their missions
  • Sponsor workshops and conferences that spark learning, connection, and progress
  • Show up to engage, volunteer, and participate in events where families gather to share information, support each other, and raise awareness
  • Develop training, programming, and engagement experiences that help ITF employees understand what really matters to the families we serve

We are actively working with multiple advocacy groups and continuing to build new relationships. These organizations are some of the partners we collaborate with to support families affected by rare disease.

For information about our engagement with patient advocacy organizations

Please contact [email protected]

Email Patient Advocacy

Patient Support Program

ITF ARC offers support that helps make insurance coverage navigation easier, helps address patient financial concerns, and encourages adherence to therapy.

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