Education

RARE Compassion Program

Starting Wednesday, August 14, 2024, applications will be open for individuals and their families to apply for this year’s program. Applications will remain open until all spots are filled.

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It is estimated that 400 million people worldwide, 3.5 – 5.9% of the global population, are living with a rare medical condition.

The RARE Compassion Program provides an opportunity for medical students to learn about the unique needs and challenges individuals and their families face living with an undiagnosed or rare disease. The program offers students a chance to build compassion, understanding, and empathetic communication skills, and gain interest in specializing in fields most relevant to rare disease. For patients, the program is an opportunity to advocate for the rare community, gain a greater understanding of the medical system and become better prepared to communicate with their doctors and other medical professionals. This year, we have joined forces with the Ross University School of Medicine and their dedicated medical students. We invite individuals and families impacted by rare diseases to take part in this year’s program.

Hear from past RARE Compassion Program participants

Participant Testimonials

“Up until this point, most of my exposure and understanding of rare disease came from textbooks and lectures. To be able to actually discuss with a patient and their family the implication and impact of a rare disease diagnosis was one of the most eye opening and substantial experiences I have had in my medical education.”
-Sara Nesheiwat, 2021 student participant

“The discussions really made what I was learning in school feel real. It’s easy in medical school to get stuck behind books memorizing the details of “rare” conditions, but there are indeed people living with these diseases. This knowledge now that I am learning could help make a rare disease diagnosis in the future”
-Erin Kim, 2022 student participant

“This had a huge impact in a way where I want to go and teach in every university where medical students are. It is so important for medical students to know the patient journey as they will have more empathy”
-Maria Hadjidemetriou, 2022 patient participant

“It is incredible what a conversation can bring, unveiling truths and hardships with a stranger over a phone call, when many patients do not have the opportunity to feel and relay this degree of comfort with even their own providers. It is an immense privilege to be a part of this experience.”
-Hannah Diasti, 2022 student participant

“I’m very grateful that Global Genes has set this platform where doctors are volunteering to get involved to learn from us, the patients and caregivers. You have all of these doctors that are in school now that are willing to learn, and use the CAM approach. I’m so grateful. There will be a time when someone after us will not have to struggle. It will be common for doctors to say, aha, I’ve heard this before.”
-Laura Wylesky, 2022 patient participant

Value of Program Participation

Students have the opportunity to

Meet 1:1 with an individual and their family experiencing a rare diagnosis
Network with professionals and advocates working in the rare disease space
Attend Global Genes events, such as the Health Equity Forum and Rare Advocacy Summit
Apply for the David R. Cox Scholarship. Information about the 2023 scholarship can be found here.

Individuals / families have the opportunity to

Share their story with future healthcare professional in effort to build the next generation of future medical professionals as key advocates for their patients
Participate in the RAREly Told Stories Filmmaking Workshop
Network with professionals and advocates working in the rare disease space
Attend Global Genes events such as the Health Equity Forum and Rare Advocacy Summit

Thank You To Our Program Sponsors

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If you have any other questions, email us at [email protected]

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