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RARE Compassion Program

Applications are currently open for the 2023 program – apply today!

Medical Student Application Patient Application

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 open for the 2023 program – apply today!

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 2022 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

2022 Speakers

Adam Johnson, M.Ed, Ed.S

Patient Advocate

Angela Lindig

Executive Director, Idaho Parents Unlimited

Charles Hammond, MD, MPhil, FWACP, FGCP

Consultant Pediatric Neurologist, Komfo Anokye Teaching Hospital

Hannia Ramos, MD

Program Coordinator, Amyloidosis Center, Medical University of South Carolina

Mike Hu, PhD

co-Founder, Project GUARDIAN

Moyez Jiwa, MD

Associate Dean, Melbourne Clinical School, University of Notre Dame Australia

Nicole Glenn, MD

Pediatrician

Rachel Callander

Artist, Rare Mom, Author

Ronisha Edwards, MSW, LSW

Program Coordinator, University of Illinois at Chicago, Sickle Cell Readiness and Transition Clinic

Ryan Sheedy

Founder, Mejo

Sehreen Noor Ali

co-Founder, Sleuth

2022 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. See the 2022 winners below.

2022 First Place Winner Medical Dignity at Every Turn: Insights Learned from Rare Disease

Raymond So, Medical Student at Johns Hopkins School of Medicine

I decided to pursue a career in medicine in hopes that no patient would ever have to feel the same way. But more than that, I came to RARE Compassion in the recognition that my mother’s story is only one…

Read More

2022 Second Place Winner Talking Can Be Excellent Medicine

Jenna Kwiecinski, Medical Student at Cooper Medical School of Rowan University

Being involved with this program has taught me to never settle and to never be content with the realm of knowledge that I have. There is always more to see, learn, and do…

Read More

2022 Third Place Winner Rare Diseases: Reconciling Uncertainty and Family

Leah Sarah Peer, Medical Student at Saint James School of Medicine

Motivated to interact with patients beyond medical school, in 2021, I launched my own podcast series, “Behind Diagnoses: Patients”, with the aim to hear about the challenges patients…

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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