Meet our Patient Worthy Contributors

While we rely on the perspective of our amazing Patient Worthy Contributors and readers to publish content for the rare community, we want you to meet some of our team, essential to making the magic happen!

Sarah Sproha, Operations Manager, has a long varied tradition of being a Jill-of-all-Trades. Working as a part of small to medium sized groups and making all of the pieces of the puzzle fit together and run smoothly is her forte.  Patient Worthy is her first exposure to the caring world of patient advocacy and health sector and she is loving every minute of this unique environment.  Disseminating information to patients with rare diseases who might not have any other resources, connecting them to others, and providing positive relationship is fulfilling in a way she has never experienced in any other position in the past. 

 

Kathryn Devanny, Director of Advocacy Relations. Listening to patients and incorporating their needs and perspectives, as to what really matters in health care is Kathryn’s primary goal. She encourages efforts to empower patients and those hoping to make new treatments, and supportive services available to them. She has worked in primary care planning, community health education, hospital administration and occupational medicine prior to concentrating in rare disease research and advocacy. She holds graduate degrees in Anthropology and Public Health Planning and Administration.

Rebekah Horsting, Community and Content Manager. holds a degree in cultural anthropology with a concentration in medical anthropology from the University of Mary Washington, and a Patient Advocate Certificate via the PPALS program. She is passionate about amplifying the voices and experiences that are not often heard, and believes in the impact that those voices can have.

Ilana Bean, Managing Editor. Ilana’s background is in medical illustration and communication, and she believes that patients shouldn’t need specialized training to learn about the research and policies that affect their everyday lives. Her favorite part of working at Patient Worthy is seeing people with rare and neglected conditions recognize the power of their own stories.

James Moore, Writer. James has an educational background focused on history and the nonprofit sector. Since beginning work at Patient Worthy, he has developed a strong passion for writing stories that center on the voices of rare disease patients and also keeps them informed of the latest developments. James also believes strongly in the value of learning about patients’ experiences at rare disease conferences and other events firsthand.

 

 

 

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