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 FormIt 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 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
For Medical Students
For Patients and Family
Program Overview
2023 Speakers
Cara Freedman
NORD
Cara Freedman
NORD
Cara Freedman
Research Assistant
National Organization for Rare Disorders
Session: Students Program Meeting 2 Mental & Emotional Health
Cara Freedman (she/her) is a Research Assistant working on natural history studies at the National Organization for Rare Disorders (NORD). Cara’s brother, Jack, lived with Spinal Muscular Atrophy (SMA) for 26 years. She earned a bachelor’s degree in Biochemistry and Molecular Biology from Ursinus College in 2022. Cara lives in West Hartford, CT and enjoys playing tennis, listening to podcasts, and volunteering at the annual Cure SMA conference.
Aditi Kantipuly, MD, MS
McGill University
Aditi Kantipuly, MD, MS
McGill University
Aditi Kantipuly, MD, MS
Session: Students Program Meeting 2 Mental & Emotional Health
Dr. Aditi Kantipuly is a physician with broad-based experience in government, academic medicine and journalism. Working to build sustainable communities, with a focus on genetics and health equity.
Connie Montgomery
Occupational Therapist (Ret)
Connie Montgomery
Occupational Therapist (Ret)
Connie Montgomery
Retired Occupational Therapist; Global Patient Advocate
Session: Students Program Meeting 2 Mental & Emotional Health
Christina Newell, LMHC, CMHS
Northwest Rare Disease Coalition
Christina Newell, LMHC, CMHS
Northwest Rare Disease Coalition
Christina Newell, LMHC, CMHS
Licensed Mental Health Counselor
Northwest Rare Disease Coalition
Session: Students Program Meeting 2 Mental & Emotional Health
Carlene Radix, MD, MPH
Ross University School of Medicine
Carlene Radix, MD, MPH
Ross University School of Medicine
Carlene Radix, MD, MPH
Assistant Dean Community Medicine and Global Health
Ross University School of Medicine
Session: Health Equity in Rare Disease – Student Meeting
Dr. Carlene Radix currently serves as the Assistant Dean Community Medicine and Global Health at Ross University School of Medicine. Prior to this she served as the Head of the Human and Social Division at the Organisation of Eastern Caribbean States (OECS) Commission. She earned an MD at St George’s University, her MPH at UMDNJ, a Med-
Peds Residency and, and an Occupational Medicine and Environmental Health Fellowship. Dr. Radix has held various positions in Clinical Medicine, Academia, Public Health and Health Administration in several countries.
Chrissy Salley, PhD
Courageous Parents Network
Chrissy Salley, PhD
Courageous Parents Network
Chrissy Salley, PhD
Pediatric Psychologist
Courageous Parents Network
Session: Students Program Meeting 2 Mental & Emotional Health
Ronda Thorington
LPC & Parent Coach
Ronda Thorington
LPC & Parent Coach
Ronda Thorington
LPC and Parent Coach
Session: Students Program Meeting 2 Mental & Emotional Health
Chris Velona
Podcaster & Advocate
Chris Velona
Podcaster & Advocate
Chris Velona
Consultant, podcaster, rare disease advocate, philanthropist
Session: Students Program Meeting 2 Mental & Emotional Health
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
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…
2022 Second Place Winner Talking Can Be Excellent Medicine
Jenna Kwiecinski
Medical Student
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…
2022 Third Place Winner Rare Diseases: Reconciling Uncertainty and Family
Leah Sarah Peer
Medical Student
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…
Participant Testimonials
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