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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Pam Cusick, Featured Member of Learning Disabilities of America Assoc.

March 13, 2024 Laura Mullen

Last month in Orlando, FL, RPV Senior Vice President Pam Cusick delivered a powerful multimedia presentation on neurodiversity and workplace accommodations at the 61st Annual Learning Disabilities Association of America Conference. Pam was also recently highlighted as a featured member of the LDA and was interviewed for the article below that appears on the LDA website.

https://ldaamerica.org/meet-our-members-meet-pam-cusick/

Pam Cusick

Tell us about yourself!

I’m a research professional with expertise in research study design, implementation, and analysis. My background in public health communications and research, coupled with a passion for patient advocacy, were a great match with the Rare Patient Voice (RPV) mission and vision, and I’ve been with the company for almost eight years. I’m dedicated to helping people to share their opinions and experiences with decision-makers, which can have a major impact on others living with their disease as well as those down the road. It’s always a treat to meet people at in-person events and hear their stories of taking part in healthcare research. As Senior Vice President of RPV, I work on the company’s continued growth and success, with a focus on client services and business development, and oversight of patient outreach, panel management, and marketing. I’m also a wife, mom, daughter, and friend, and I really enjoy mentoring other women in the research community.

What’s a fun fact about you?

I’m a superfan of the classic movie, The Wizard of Oz. In fact, several years ago I dressed as Dorothy for Halloween, while RPV President Wes Michael went as the Scarecrow!

Why did you become a member of LDA?

I became a member of LDA for both personal and professional reasons. One of my two sons lives with hearing loss and learning disabilities, so I know very well about the challenges he has faced, which has spurred me to advocacy. This includes raising awareness of the issues people living with learning disabilities face, such as neurodiversity and accommodations in the workplace (which I presented on at this year’s LDA conference). Wearing my RPV hat, it’s important to spread the word about how we connect people with opportunities to take part in paid research studies. We welcome all members of the learning disabilities community to sign up with us at: https://rarepatientvoice.com/for-patients/patient-and-caregiver-sign-up/

Filed Under: Business, Get To Know, Patient

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