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
2022 Speakers
Adam Johnson, M.Ed, Ed.S
Patient Advocate
Adam Johnson, M.Ed, Ed.S
Patient Advocate
Adam Johnson is a rare disease patient and self-proclaimed DadVocate (a dad first and advocate second). A lifelong educator, he lost his career after receiving a life-altering diagnosis in 2019. Feeling alone, afraid, and helpless, he sought connection with others and began advocating through social media, a website, a blog, and a podcast series called Parents As Rare, part of MitoAction’s Energy In Action podcast. He is motivated to own his story while supporting others, including his children, family, the rare disease community and other parents facing similar challenges.
Angela Lindig
Executive Director, Idaho Parents Unlimited
Angela Lindig
Executive Director, Idaho Parents Unlimited
Angela Lindig is the executive director at Idaho Parents Unlimited, the state’s Parent Training and Information Center and Family to Family Health Information serving families who are raising children with disabilities and special health care needs. Her oldest daughter has the ultra-rare genetic HNRNPH2 related disorder and was the 80th person in the world diagnosed with the condition after receiving updated genetic testing in January 2020, concluding a nearly 24-year search for an accurate diagnosis while opening doors to new information and opportunities for her daughter’s future.
Charles Hammond, MD, MPhil, FWACP, FGCP
Consultant Pediatric Neurologist, Komfo Anokye Teaching Hospital
Charles Hammond, MD, MPhil, FWACP, FGCP
Consultant Pediatric Neurologist, Komfo Anokye Teaching Hospital
Dr. Charles Hammond is Consultant Pediatric Neurologist at Komfo Anokye Teaching Hospital and a senior lecturer at the School of Medicine and Dentistry, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana.As current head of Pediatric Neurology and Neurodevelopment at Komfo Anokye, he leads the Pediatric Epilepsy Training course in Ghana and serves on the International League Against Epilepsy Access to Medications Task Force. His research interest is in pediatric neuroAIDS, neuroinfections, epilepsy, and rare neurological disorders and he advocates for children with neurological disorders. Dr. Charles Hammond is Consultant Pediatric Neurologist at Komfo Anokye Teaching Hospital and a senior lecturer at the School of Medicine and Dentistry, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana. He is the current head of Pediatric Neurology and Neurodevelopment at Komfo Anokye and leads the Pediatric Epilepsy Training course in Ghana and serves on the International League Against Epilepsy Access to Medications Task Force. His research interest is in pediatric neuroAIDS, neuro-infections, epilepsy, and rare neurological disorders, and he advocates for children with these disorders.
Hannia Ramos, MD
Program Coordinator, Amyloidosis Center, Medical University of South Carolina
Hannia Ramos, MD
Program Coordinator, Amyloidosis Center, Medical University of South Carolina
Dr. Hannia Ramos is the program coordinator of the Amyloidosis Center at the Medical University of South Carolina where she helps with clinical trials, including for transthyretin amyloidosis (ATTR). At MUSC she worked with Dr. Daniel Judge to establish a specialized center for amyloidosis where, learning from experts, she helps the amyloid community through patient education, sharing knowledge on research/evidence-based practice, and bringing awareness of inherited gene variants like hereditary ATTR.
Mike Hu, PhD
co-Founder, Project GUARDIAN
Mike Hu, PhD
co-Founder, Project GUARDIAN
Dr. Zhanzhi Hu (aka Mike) is a parent of two children with a rare disorder. He is an ardent advocate for newborn screening and works tirelessly to bridge the gap between advanced technologies and the critical need of expansion of the newborn screening public health program. Mike is the co-founder and President of Project GUARDIAN, a nonprofit organization with the mission of advancing genomics based newborn screening. He also serves as a member of the Steering Committee and the chair of the Researcher Needs Workgroup at the Newborn Screening Translational Research Network (NBSTRN). Additionally, he is an Adj. Associate Research Scientist at Columbia University where he conducts newborn screening related research projects. Previously, Mike was the Associate Director of Product Development at Veracyte and had led the development team to successfully launch multiple diagnostic products during his tenure. Before joining Veracyte, Mike co-founded a precision medicine startup to pioneer advanced reproductive healthcare by genome scale carrier screening. Prior to that, Mike had led development teams at Complete Genomics and Affymetrix to develop next-generation sequencing technologies and products. Mike received his Ph.D. degree in Molecular Genetics and Microbiology from the University of Texas at Austin, and the B.S. degree in Cell Biology and Genetics from Peking University.
Moyez Jiwa, MD
Associate Dean, Melbourne Clinical School, University of Notre Dame Australia
Moyez Jiwa, MD
Associate Dean, Melbourne Clinical School, University of Notre Dame Australia
Moyez Jiwa is the associate dean at the Melbourne Clinical School, University of Notre Dame Australia. He is also the editor-in-chief of the Journal of Health Design and hosts the Health Design podcast. Jiwa received his medical degree from Trinity College Dublin, trained as a family physician in Scotland, and did postgraduate work at Nottingham and Sheffield Universities in the U.K. The author of The Art of Doctoring, which includes 30 years of research, Dr. Jiwa believes that we can change outcomes in healthcare today by focusing on how we communicate.
Nicole Glenn, MD
Pediatrician
Nicole Glenn, MD
Pediatrician
Nicole Glenn is a pediatrician, rare disease advocate, and mother of two children. Her 5-year-old daughter, Rosie, has rare neurodevelopmental disorder, caused by HNRNPH2 mutation. Dr. Glenn serves as a delegate for The Yellow Brick Road Project, the parent-lead foundation supporting individuals living with HNRNPH2 mutations. She earned her bachelor’s degree in Physiology at the University of Colorado, and her medical degree at Rush University. She completed her pediatric residency at Stanford Children’s Hospital and practices primary care pediatrics in Northern California.
Rachel Callander
Artist, Rare Mom, Author
Rachel Callander
Artist, Rare Mom, Author
Rachel is a TEDx presenter, speaker, trainer, award winning artist and the author of two books- Super Power Baby Project and Super Power Kids. These exceptional books celebrate the lives and abilities of children with a range of disabilities and conditions, and have been inspired by Rachel’s late daughter Evie, who was born with a very rare chromosomal condition. In the two and a half years of Evie’s life, Rachel learnt a lot about the use of language in the health system, and has spent the subsequent years continuing to explore the impact and implications of how it is used – to positive and negative effect. Our language shapes our landscape. The words we speak influence the behaviour, attitudes, and beliefs of ourselves and others. Within high-stakes contexts, such as the sharing of difficult information, our words carry an enormous emotional weight. They can alienate and add trauma, or they can honour and empower
Ronisha Edwards, MSW, LSW
Program Coordinator, University of Illinois at Chicago, Sickle Cell Readiness and Transition Clinic
Ronisha Edwards, MSW, LSW
Program Coordinator, University of Illinois at Chicago, Sickle Cell Readiness and Transition Clinic
Ronisha Edwards-Elliott is the current program coordinator for the University of Illinois at Chicago, Sickle Cell Readiness and Transition (STAR) Clinic, Group Care Program. Through her role, she offers a diverse patient experience, medical social work, case management for patients, and expertise in developing relatable and understandable patients’ educational materials. Ronisha focuses her work on bridging the gap within healthcare, mental health, and empowering patients to pursue suitable workforce and/or post-secondary opportunities despite disability limitations. She specializes in serving adolescent young adults through the emerging adulthood stage of life as they transition into next stages. She has been instrumental in the creation of a Peer Patient Advocate Program that provides mentorship and peer support from transitioned adult patients to adolescent and young adult patients. As a sickle cell patient, Ronisha has dedicated her professional life to micro and macro level advocacy for sickle cell patients.
Ryan Sheedy
Founder, Mejo
Ryan Sheedy
Founder, Mejo
Ryan Sheedy is a Dad, Rare Disease Caregiver and Founder. He lives in Bentonville, AR with his wife and 3 sons. In 2018, after 15+ years in Business Development and Fundraising he “retired” early to become a Stay at Home Dad/Caregiver for his twin sons. One of his sons, Reynolds was diagnosed with Costello Syndrome in 2018. Since birth Ryan has been Reynolds’ primary caregiver (100+ days in the NICU, countless surgeries and managing a 25+ person care team). He and his son’s journey and the countless families they have met along the way have inspired him to create Mejo, a platform that helps organize, simplify and share caregiving
Sehreen Noor Ali
co-Founder, Sleuth
Sehreen Noor Ali
co-Founder, Sleuth
Sehreen Noor Ali is a mom and technologist who is now the co-founder of Sleuth, a search engine for children’s health. Inspired by her struggle getting answers for her daughter’s condition, Sleuth’s vision is to elevate the expertise of caregivers and to become the largest platform for patient-derived health insights. Sehreen started her career as a public servant with the U.S. Department of State, spent several years as an executive within edtech, and started the award-winning network EdTechWomen. She lives in NYC and is the proud mother of two little girls. She loves connecting with other parents on IG @sehreennoorali and @hellosleuth.
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
Email Us
If you have any other questions, email us at [email protected]
Stay Connected
Sign up for updates straight to your inbox.