Shruti Mitkus is the Director of Genetic Education and Navigation at Global Genes, a leading rare disease patient advocacy organization. Shruti is a human molecular genetics scientist and genetics educator. She earned her doctorate in Human Genetics from University of Maryland Baltimore and completed her post-doctoral training at the National Insti…

Estela was diagnosed with a progressive neuropathy called Charcot-Marie-Tooth (CMT) at four years old, followed by her younger sister two years later.In 2002, she graduated from FIT with a Bachelor’s in Interior Design. Today, her professional background in design, marketing, trend forecasting, and creative direction brings an unexpected approach t…

Dr. Sarah Parker Ward wants to help you think more affectionately about death so you can experience a healthier, more fulfilling life. Sarah holds a Ph.D. in Emerging Media Studies from Boston University where her research explored death cognition and related policy implications. She continues this thanatological work today both in practice and stu…

Neilanjan Nandi, MD, FACP is an Associate Professor of Clinical Medicine at Penn Presbyterian Medical Center at the University of Pennsylvania. Dr. Nandi's practice focuses on the management of Inflammatory Bowel Disease (IBD, eg, Crohn's disease, Ulcerative Colitis) and recurrent Clostridium difficile infection via Fecal Microbiota Transplantation…

Erin Moore is a visionary leader and innovator focused on transforming healthcare and building a more equitable economy for health and care. As the founder of Meanwhile Health, Erin leverages her strengths in systems thinking, strategic management, and leadership to drive meaningful change. Erin is an exceptionally skilled communicator, serving as …

Dr. La Toya Luces-Sampson, affectionately known as Dr. Toya on social media, is a multi- faceted individual—a wife, mother, board-certified Obstetrician and Gynecologist, entrepreneur, speaker, and best-selling author. Born and raised in Trinidad and Tobago, she journeyed to the United States where she earned both her Bachelors and Medical Degrees …

Terri Coutee is the Founder and Director of DiepCFoundation. She started the nonprofit organization in 2016, two years after her own successful breast reconstruction, to provide support, education, and resources for those affected by breast cancer facing mastectomy. Terri hosts the DiepCJourney podcast and the DiepC Foundation educational channel w…

Dr. Eugene Manley Jr is an inspirational speaker that often speaks about overcoming barriers, mentoring, and STEM and workforce diversity. He is a Mechanical Engineer, Biomedical Engineer, and Molecular and Cell Biologist with expertise in musculoskeletal biology, biomechanics, and cancer biology. He is adept at planning and executing complex syste…

Dr. Yun “Sherry” Wang is an Assistant Professor on the tenure track at Chapman University School of Pharmacy (CUSP). Her academic journey is built upon a foundation in Geospatial Science from Washington University in St. Louis, an exploration of Data Science at Monash University, and comprehensive Ph.D. training in Clinical Pharmacy. Since she arri…

Dr David Beaumont is a Consultant Occupational Physician, a doctor specialising in the health of workers. He is a Past President of the Australasian Faculty of Occupational and Environmental Medicine. He provides consultancy services to some of New Zealand’s major employers and also the provision of health and wellbeing programmes through his compa…

Our guest on this episode of the HD podcast is Vanessa Joy Walker: Health Consumer Advocate, Survivorship Coach, and Founder of Living After Crisis Inc. Currently pursuing an MPH at UNC Gillings School of Global Public Health, Vanessa collaborates with esteemed organizations such as HMP Global's Psych Congress and Caelum Diagnostic Solutions. Her p…

Nick Holekamp, MD, is the vice president and chief medical officer at Ranken Jordan Pediatric Bridge Hospital. He joined in 2000, and for nearly two decades, he’s helped more than 2,000 children and their families transition from a traditional hospital to home after chronic illness or injuries. Under Dr. Holekamp’s leadership, Ranken Jordan transit…

Ibrahim Rashid is the Founder of the Strong Haulers, a digital health platform that leverages data to help those with Long COVID and other chronic illnesses manage their symptoms. He is also the author of Strong Hauler: Learning to Live with Long COVID, a memoir of lessons learned while navigating chronic illness at a young age. His commentary on l…

Kathy O'Shea is a 46-year migraineur and 36 year professor of English, who has combined these significant parts of her life into this literary anthology centered around five themes related to migraine. She is the winner the Chancellor's Award for Excellence in Teaching and has two beloved golden retrievers who are official therapy dogs at Monroe Co…

Tanisha Bowman, MSW, LSW, APHSW-C, NEDA Proficient, is a death doula living in Pittsburgh, PA who currently works as a full-time palliative care social worker in a small rural healthcare system. With the support of an amazing palliative care team, Tanisha has been able to explore ways to bring her passion for death care and openness about death and…

Christina Gagnon is a former micro preemie survivor, born in 1986. She’s someone who’s defeated the odds at times when medical technology was 50/50. It was the time of trial and error. She’s now come to tell her heroic story to all.By Moyez Jiwa

Charles Gellman is the Chief Patient Advocate of HiDO Health. His expertise is in clinical informatics and data analysis which accelerates the understanding of health data to improve health outcomes. HiDO research is focused on reducing home medication errors, avoiding unnecessary hospitalizations and saving billions of healthcare dollars. Together…

Soula MantalvanosArtist, designer and gallerist.Advocate for the better quality of care, founder of My Health Story.Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care.In addition to presenting at medical conferences, Soula has self-published a book, ap…

Dr. Molander is an emergency medicine physician with greater than 25 years in clinical care. She analyzes quality of care and is passionate about patient education. Dr. Molander became involved in the world of sepsis in 2007, initially training intensivists in Early Goal Directed Therapy. She served on her hospital Sepsis committee from 2009 to 201…

I am a professor of Genetics and Oncology at Memorial University, Newfoundland and Labrador (Canada). My main interests are identifying social and medical outcomes of cancer patients and their predictors (including demographic and biological markers). In the last few years, I also become interested in patient-oriented research and public engagement…

Dr. Jim Feng is a visionary entrepreneur dedicated to revolutionizing the healthcare industry through innovation and technology. With a passion for improving human performance and well-being, Dr. Feng has made significant strides in the field of integrated health models and disruptive healthcare technologies. Driven by his deep understanding of hea…

Short Bio Kimberly Reyes is a veteran educator, historian and trained political scientist. She has nearly 2 decades of experience in early childhood and primary education. Fluent in 4 languages, her parenting and educational philosophies pull from both Eastern and Western traditions. She is a mother of a toddler born at 26 weeks, speaking often on …

Patricia Weltin is the CEO/Founder of Beyond the Diagnosis, a traveling art exhibit that unites art and science to inspire research and innovation of treatments for people living with rare diseases. Artists paint portraits of children living with a rare disease; the portraits then become part of a traveling exhibit for medical schools, research ins…

Erik Cardenas is Co-Founder & CEO at Zócalo Health, a digital health company committed to providing a premier family medicine experience that is tailored for the Latino community. In his 20+ year career, Erik has assumed various leadership roles for companies like Amazon, Everlywell, and Tenet Health. In March 2021, he was appointed to Rogers Behav…

Christina Cummins (she, her. hers) owns a private practice and consulting agency that offers therapy services and training programs for staff development. She has been in the healthcare field for over ten years, and for most of that time, her focus has been on mental health treatment and leadership. Christina is passionate about helping progressive…

Becky Sansbury, M.Div., has spent thirty-five years focused on crisis care, working with individuals and organizations. Serving as head chaplain for Transitions LifeCare, a hospice and palliative care agency, she provided hands-on spiritual and emotional support for patients, families and colleagues. Simultaneously, she learned principles of dealin…

Dr. Jessica “Jess” Daigle is a board-certified pediatrician, Nicu and pediatric hospitalist, and the Founder/CEO of Mom & Me MD, an in-home & virtual concierge practice in Atlanta designed to deliver 1:1 personalized care to newborns and their mothers during the 4th trimester to ease the transition home after birth.Dr. Daigle received her Doctor of…

Ramoeli was born in Lesotho, a country encircled by South Africa, and lives with Ehlers-Danlos syndromes and many other comorbid conditions. This young woman relentlessly fights for improved access to health care for rare disease patients in her home country and shares the story of her path to the diagnosis of EDS diagnosis in the context of a plac…

Andrea Anampa-Guzmán was born in Lima, Peru. She is a medical student at Universidad Nacional Mayor de San Marcos. In 2017, she took a break from her medical studies to perform a research rotation at the University of Pennsylvania. In 2021, she became a permanent resident of the United States and moved to Buffalo, New York. She performs research fo…

Dr. Naesha Parks was born and raised in Thomson, Georgia. She has had a number of spiritual encounters, which have contributed to her strong faith and belief that all things are possible to those who believe. Her recent encounter left her with an amazing story that she believes was meant to bless the lives of others. Dr. Parks has twenty years of e…

A suburban Philadelphia native, Rob is a former All-American punter at Syracuse and has lived the rare disease journey. In December of 2010, late in his senior season, Rob was diagnosed with anaplastic astrocytoma, a rare and aggressive form of brain cancer. His prognosis at the time was less than encouraging, and his surgery, recovery, and treatme…

Robin Powers is an expert in Ehlers-Danlos syndrome and other rare connective tissue disorders. She is a PCORI Ambassador, she is a seasoned advocate for rare diseases and patients with undiagnosed conditions and is also a motivational speaker. She is a researcher and biochemical pharmacologist, earning her degree at Buffalo State College in 2019.…

Tim McLerran is a physician entrepreneur-turned AI software developer with a mission to bring together human and machine intelligence in day-to-day clinical practice. He co-founded Medical Intelligence One to carry out that mission, and the company is currently building technologies and services that help people obtain diagnoses for rare diseases. …

Vanessa Ferreira is a patient advocate who has committed more than 14 years of professional and personal commitment to patient associations in numerous countries and areas, such as rare diseases and cancer.She holds an MBA from Sorbonne University Paris and a Ph.D. in cell and molecular biology. She has one sister living with a rare disease called …

Dr. Neuro has 10+ years of experience of providing clinical, policy, and technical leadership for infectious diseases worldwide with the U.S. Government. In recent years, he has provided his support for the 2014 Ebola Outbreak, HIV/AIDS, Tuberculosis, Malaria, Zika, Monkeypox, and COVID. His focus is in bridging clinical evidence to actionable poli…

David Law is an internal medicine physician and hospitalist. He is also a musician, an award-winning filmmaker, and most importantly he is a rare disease advocate in honor of his daughter, Violet, who is diagnosed with a progressive neurologic condition, GM1 Gangliosidosis. He lives in Los Angeles with his wife, Dr. Veena Sison, a developmental ped…

Dr. Diana Londoño is the founder of Physician Coach Support.com, where doctors can get free and confidential, peer led support over Zoom 7 days a week. She is a certified life coach and founded this platform to help her colleagues as burnout rates are at 60% or greater for many specialties. She received the Los Angeles Medical Association Physician…

Swapna Kakani is a nationally known speaker, and an award-winning advocate in rare and chronic disease healthcare delivery and the patient experience. Her life story shows audiences her individual resilience and self-determination in the face of constant difficulties, as well as the impact her healthcare advocacy has across disciplines. Swapna was …

After growing up in rural Southeast Alaska, Orion studied business and social entrepreneurship at the University of Oregon where he received the Oregon Student Impact Entrepreneur of the Year Award in 2013.While finishing school, Orion co-founded Orchid Health with the vision of creating a new model of primary care that better serves both healthcar…

Emily Parks is a chronically ill young professional based out of San Francisco working in behavioral health and patient advocacy. Having been diagnosed with short bowel syndrome in infancy and unable to absorb nutrition orally, she was dependent on Parenteral Nutrition until receiving an isolated small bowel transplant from MedStar Georgetown Unive…

Gary David is a Professor Sociology and Experience Design at Bentley University in Waltham, Massachusetts. His work focuses on how to create experiences that bring people together to create a sense of connections and belonging. In experience design, he specializes in customer, user, learning, employee, and patient experiences. He also researches th…

Trevor Maxwell, 45, has been living with stage IV colon cancer since March of 2018. He has undergone five major surgeries, chemotherapy, immunotherapy, and a clinical trial. He lives in Maine with his wife and two teenage daughters. In January of 2020, Trevor founded Man Up to Cancer, a purpose-driven company and support community that inspires men…

Sarita Edwards is CEO & President at the E.WE Foundation, a nonprofit healthcare advocacy organization. She began her efforts of advocacy and public policy after her 5th child was diagnosed in utero with rare disease Edwards Syndrome or Full Trisomy 18. Sarita is recognized as a world's top patient expert and social health ambassador. She is an awa…

Doug Lindsay has spent the last two decades investigating and tackling rare, complicated medical conditions – first in himself and his family and now through his Personal Medical Consultant service. An innovator, Doug partners with clients and experts to make new things happen. He works to get clients who are stuck in the medical system unstuck. To…

Michael W. Rabow, MD, FAAHPM, the Helen Diller Family Chair in Palliative Care, is a Professor of Clinical Medicine and Urology at UCSF. He is the Associate Chief of Education & Mentoring in the Division of Palliative Medicine in the Department of Medicine, and the Medical Director of Palliative Care at UCSF’s Helen Diller Family Comprehensive Canc…

Jared Rubenstein is a pediatric palliative care doctor and medical educator. He is passionate about using communication tools, creativity, and humor to help people talk about hard things. He lives in Houston, Texas, USA with his wonderful family.Youtube channel: https://www.youtube.com/channel/UCwzLhSI2v1ySPbU-LPTZzbQAnd twitter handle is @DrJRuben…

Marijke Vroomen Durning always wanted to be a writer but her teachers and parents didn’t support that choice; they told her to choose something more practical. She became a nurse As an RN, Marijke literally worked with patients from life to death. Her first job was working with new mothers and their infants on a postpartum ward. One of her last cli…

Seth Rotberg is a patient advocate, community connector, and motivational speaker. His passion is driven by his mother’s 17-year battle with the rare, genetic disease known as Huntington’s Disease (HD). Through his 13 years of experience navigating the healthcare system, he’s worked with different healthcare stakeholders including: patient advocacy…

After suffering a stroke and dissecting three of the four arteries that supply blood flow to her brain, Pam Mace was diagnosed with Fibromuscular Dysplasia (FMD). There was no patient organization at the time, and Pam quickly learned there was a lack of knowledge and understanding of FMD. She applied her nursing knowledge and skills to raise awaren…

Ryan Prior covered health, science, and wellness during the Covid-19 pandemic as a journalist based at CNN's World Headquarters in Atlanta.He specializes in feature writing, going deep with characters who are on a mission, and who have a message for all of us.He is fascinated by figures, large and small, who dedicate their lives to changing our wor…