Making a Difference: Non-Profit Marketing Strategies for Rare Diseases | Trena Myers from Rare Wish

Making a Difference: Non-Profit Marketing Strategies for Rare Diseases | Trena Myers from Rare Wish


Feeling lost in the sea of non-profits? This episode equips you with a life raft! Trena Myers, CEO of Rare Wish, shares her experience building a successful organization for rare diseases. Learn how Rare Wish uses strategic marketing to raise awareness, engage supporters, and ultimately, change lives. Discover how their website acts as a central hub for granting wishes, connecting patients with resources, and advocating for the rare disease community.

Join us and gain valuable insights to make your non-profit a beacon of hope!

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Ernesto: Welcome to today’s episode of Pathmonk Presents. Today, we’re exploring Pathmonk, an intelligent tool designed for website lead generation. With over 98% of website visitors not converting, Pathmonk helps businesses stand out by qualifying and converting leads through tailored micro experiences like case studies and intro videos. By integrating Pathmonk, businesses can enhance visitor relevance and potentially increase conversions by 50%. For more details, visit Today, we’re joined by Trena Myers, CEO of Rare Wish. How are you today, Trena?

Trena Myers: Hi, thank you, I’m doing great.

Ernesto: It’s great to have you. Could you tell us more about Rare Wish?

Trena Myers: Absolutely. Rare Wish is a nonprofit aimed at improving the quality of life for families affected by rare diseases. We grant wishes, fund clinical innovations, and provide free healthcare tools through our program, Code Rare, which supports both clinical staff and patients.

Ernesto: That sounds incredibly impactful. What kinds of collaborations does Rare Wish engage in?

Trena Myers: We’re part of Rare Strides, a for-profit parent organization that develops technology for healthcare teams dealing with rare diseases. We also collaborate with other nonprofits to advocate for the rare disease community.

Ernesto: How can people learn more about Rare Wish?

Trena Myers: Most discover us through word of mouth, Google searches, or social media like Facebook, Instagram, and LinkedIn. Our main website is

Ernesto: What features does your website offer?

Trena Myers: Our website is multifunctional. It hosts educational resources, allows patients to share information with healthcare providers, and applicants can apply for wishes and scholarships. We also have a program where people can adopt a “rare bear,” which we distribute to provide hope to those with rare diseases.

Ernesto: Moving to your role, Trena, as CEO, what are your main focuses?

Trena Myers: My primary focus is advocacy. Our hashtag #MakeRareVisible highlights the importance of raising awareness for the over 10,000 rare diseases. Many are undiagnosed or misdiagnosed, which was my experience, leading to significant health issues.

Ernesto: Let’s touch on marketing trends. How do you stay current?

Trena Myers: I keep updated through newsletters and ensure our marketing strategies align with the latest in AI and healthcare, particularly compliance with HIPAA.

Ernesto: Lastly, if you had one message for our listeners to remember about Rare Wish, what would it be?

Trena Myers: Help us advocate for the rare disease community and support our mission to make Rare visible.

Ernesto: Thank you so much, Trena, for joining us today and to our listeners for tuning in to Pathmonk Presents.

Trena Myers: My pleasure, thank you.