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.

Patient Resources

To explore these organizations and many other resources that support individuals and families, please visit our online resource directory. The directory is designed to help connect you with patient advocacy groups and community organizations that can provide information, support, and links according to some of your questions.

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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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