In this episode of Empowered Caregivers, I chat with Pam Cusick, Senior VP of Rare Patient Voice, about the ups and downs of caregiving for those with chronic illnesses. We look into the world of caregiving, urging a shift from viewing it as a sacrifice to seeing it as a source of empowerment and strength. Pam, from Rare Patient Voice, shares how their group connects patients and caregivers with key research opportunities, aiming to make healthcare more inclusive.

We discuss the importance of sharing personal stories to build community and push for advocacy. Pam highlights that these stories not only validate what caregivers go through but also help medical professionals understand the real-life impact of chronic conditions. The episode encourages caregivers to see their crucial role in healthcare and get involved in initiatives that showcase their unique experiences. This conversation invites listeners to rethink the traditional views of caregiving and embrace a more empowered approach.

You can learn more about Rare Patient Voice at their website: https://rarepatientvoice.com/

• Rare Patient Voice connects patients and caregivers with research opportunities.
• Sharing personal stories can empower others and improve healthcare outcomes.
• Caregivers face significant financial and emotional burdens.
• Patient advocacy is crucial for improving understanding of rare conditions.
• Engaging in research can provide therapeutic benefits for patients.
• The importance of community and support for those with rare diseases.
• Patients are the experts on their own conditions.
• Caregivers often have different perspectives than patients on their experiences.
• Rare Patient Voice offers resources and opportunities for involvement.
  Awareness and education about rare diseases are essential for broader understanding.

Pam is an experienced research professional with more than 30 years of expertise in study design, implementation, and analysis. Her background in public health communications and research, coupled with her passion for patient advocacy, dovetail with Rare Patient Voice’s mission and vision. Pam hopes to expand Rare Patient Voice’s panels to include all patients and caregivers who want to share their opinions and impact their disease category.

Pam earned a BA in Psychology from Sweet Briar College, and a MA in Psychology from the New School for Social Research. Pam is Past-President of the Board of Directors and Scientific Advisory Council Lead for the Horses and Humans Research Foundation.

As Senior Vice President, Pam’s focus is on the continued growth and success of RPV, with an eye on client services, business development, and oversight of outreach and panel management, marketing, and human resources.