Participate

RARE Compassion Program

Applications are currently closed. If you would like to be notified when applications open for 2024, please fill out the interest form below.

Interest Form Support RARE Compassion

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. The program is open to students and patients worldwide.

Applications are currently closed.

If you would like to be notified when applications open for 2024, please fill out the interest form below.

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

Learn More About the RARE Compassion Program Below

Support the Program

2023 Speakers

Cara Freedman

NORD

Aditi Kantipuly, MD, MS

McGill University

Connie Montgomery

Occupational Therapist (Ret)

Christina Newell, LMHC, CMHS

Northwest Rare Disease Coalition

Carlene Radix, MD, MPH

Ross University School of Medicine

Chrissy Salley, PhD

Courageous Parents Network

Ronda Thorington

LPC & Parent Coach

Chris Velona

Podcaster & Advocate

2023 David R. Cox Scholarship Winners

The David R. Cox Scholarship is an opportunity offered to medical students through our RARE Compassion Program. Upon completing the end of the program, student participants are asked to submit an essay about their experience working with their rare patients and family partners. Among the numerous essays received, three winners are selected.

2023 First Place Winner Medical Dignity at Every Turn: Insights Learned from Rare Disease

Joshua Salisbury
2nd Year Medical Student
Paul L. Foster School of Medicine


The term, “rare disease” was commonly used in my home growing up. This was because the alternative name for the disorder my sisters had was a lot harder for people to say and understand (me included).

Read More

2023 Second Place Winner: Listen Louder

Rahi Patel
2nd Year Medical Student
Chicago Medical School


I will hold the lessons I learned in RCP in my heart for the rest of my career. I also hope to advocate for these patients through research, as many of my patient partners talked about the newfound hope they gained through clinical trials.

Read More

2023 Third Place Winner: A Listening Ear Can Diagnose & Heal

Stacey Sklepinski
3rd Year Medical Student
University of Maryland


Humanistic medicine places patients and their experiences at the center of medical care. It involves treating them holistically and compassionately, and it is precisely what I strive for in my medical career.

Read More

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

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

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