ABCs of Disability Planning

Providing Patients and Caregivers a Voice


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Providing Patients and Caregivers a Voice

 

⁠Rare Patient Voice⁠ connects patients and caregivers with the opportunity to voice their opinions through surveys and interviews to improve medical products and services.

  • ⁠For patients and family caregivers⁠ —they provide study opportunities to voice their opinions on medical products and services while getting paid for their time. ⁠Sign up here⁠.
  • ⁠For patient advocacy groups⁠ —they partner with advocacy and support groups to increase donations.
  • ⁠For market research firms⁠ —they handle patient recruitment and help find the respondents and patient panels needed for marketing research.
  • ⁠For pharmaceutical and biotech companies⁠ —they provide the respondents and patient communities required to support business insight needs and all types of research studies.
  • Pam Cusick, Rare Patient Voice's Senior Vice President, 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. She 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 an 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, her 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.

     

    Learn more:

    Website: ⁠https://rarepatientvoice.com/⁠

    FB: @RarePatientVoice

    Twitter: @rarepatientvoic

    IG: rarepatientvoice

     

    Link to Transcript: ⁠https://docs.google.com/document/d/1B8_llq6kLTdQp9c4AWMOaUKs6hnYfv20YFqNK7S_plg/edit?usp=sharing⁠


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