How AI Is Transforming Rare Disease Research
Vanessa Almendro-Navarro and Mary Carmichael of Danaher Corporation joined MiraKare founder Vik Sharma to explain how artificial intelligence gives an exponential boost to rare disease research and caregiving.
Storytelling Impacts Disease Research, Policy and Perception
Sarita Edwards' son Elijah is a Trisomy 18 survivor and in starting the E.WE Foundation she knows storytelling changes policy and lives.
‘Living Rare’ and ‘Rare Barometer’ Show Power in Numbers
Globally, Rare Barometer Turns Stories into Data for Rare Disease Advocates
Jessie Dubief of EURORDIS and Darby Gavin of NORD talk about Rare Barometer and Living Rare surveys that quantify rare disease experiences.
Flu-Related Costs Soaring As Trust in Public Health Wanes
What should journalists know about flu, COVID and RSV antiviral treatments? Drs. Robert Popovian, Sameer Vohra and Cindy Hou join KFF Health News' Arthur Allen and NPF to explain.
Child Vaccine Experts Urge Caution with ‘Anti-Vax’ Label
Parents Flooded with Misinformation Amid Changes to Trusted Sources
Dr. Paul Offit, Dr. Alok Patel, Dr. Mona Amin and Politico health reporter Lauren Gardner discuss the CDC ACIP decision on child vaccines.
How a Journalist Revealed Failures in India’s Rare Disease Plan
India's rare disease policy failed patients and families, Rupsa Chakraborty reported
Trailblazing journalist Rupsa Chakraborty told NPF Fellows how she uncovered the truth behind an Indian government plan meant to help patients with rare diseases that instead left them to die.
Capturing the Mental Health Toll of Rare Diseases
Journalists Can Provide Needed Context About Profound Psychosocial Challenges
Phillip Langat lost five relatives to motor neuron disease. Reporter Mercy Chelang'at says telling his story requires preparation and sensitivity.
Medicaid, Hospitals & the Big Beautiful Bill: ‘People Don’t Appreciate the Ripple Effect’
Journalists Can Help Communities Prepare for Medicaid Policy Changes
Experts shared story ideas on tracking the impact of the OBBBA on healthcare, especially in areas served by nonprofit hospitals.
‘Global Boiling’: Extreme Heat Taking Toll on Health, Economy
Extreme Heat Threatens Productivity, Transforms Lives
Climate change will lead to schools and work closing and heat-related illnesses, said Jason Lee of the Heat Resilience and Performance Center.
Mental Health Journalists: ‘Empathy Is My Superpower’
The Human Element Comes Into Play in Business and Health Reporting
William Wan of the Washington Post and Caroline Colvin of HR Dive share varying approaches to producing most-read mental health stories.
Journalists: Is That Study Worth Your Time?
Stop Reporting on Single Studies, Advises Tori Espensen of the American Association for the Advancement of Science
As RFK Jr. questions medical journals, Tori Espensen of the American Academy for the Advancement of Science explains how to read studies.
Frontline Workers Went from COVID Pandemic to Mental Health Pandemic
The Return to Normal Never Happened for Many Frontline Workers, Therapist Nidhi Tewari Said
As a healthcare worker shortage looms, LCSW Nidhi Tewari urges journalists to amplify their mental health challenges.
Why Newborn Screenings and Rare Disease Coverage Matter
How A Drop of Blood Helps Thousands of Families Tackle the Challenge of Rare Disease
Ahead of Rare Disease Day 2025, experts help journalists understand the science and policies surrounding newborn screening for life-threatening illnesses.
How to Become a Great Health Reporter
You Don't Need A Medical Degree. You Do Need to Ask Questions – A Lot
KFF Health News and CBS News reporters shared advice with journalists on pursuing health and science beats.
Amplify Community Voices to Tell Stories of Health Inequity
Public health is Complex. So is Health Equity. Journalists Can Help Connect the Dots
Award-winning journalist Kat Stafford and leaders of Big Cities Health Coalition and West Side United share tips for reporters.
How Community Development Financing is Different
Community Development Financial Institutions Promote Equity for Oft-Ignored Communities
Angie Main of NACDC explains how CDFIs support economically disadvantaged communities through federal and private funds.
Rebuilding After a Hurricane: Lessons from New Orleans
What Can Reporters Covering the Aftermath of Milton and Helene Learn from New Orleans?
A community advocate talks about rebuilding efforts after Hurricane Katrina, particularly in Vietnamese American communities.
United Way in Missoula Pivots Toward Collaboration
Charitable Funding for Community Development Requires Cooperation as Well as Cash
United Way Missoula County CEO Susan Hay Patrick, University of Montana's Damian Chase-Begaye and County Commissioner Josh Slotnick advise journalists about the critical role of collaboration in funding community development.
‘Housing Is Really a Human Issue’
Covering Housing Requires Understanding 'Not Sexy' Zoning and More
There are people behind the housing crisis and lives that have been uprooted because of it. Experts spoke with reporters about how to cover this sensitive topic and where to find valuable stories.
CNN Hero and Local Reporter: It Comes Down to Trust
Day Eagle Hope Project: Working with Underserved Communities on Health
Tescha Hawley, founder of the Day Eagle Hope Project, and Nora Mabie who reports on Indigenous tribes for five newspapers, share lessons.
‘We’re All Climate Reporters’
Journalists Can Help Demystify Climate and Environmental Impacts on Communities,
The impacts of climate change are happening so fast, journalists must be prepared to provide context and insights to educate the public, said veteran environment journalist Rob Chaney.
Centering Equity When Your Community is Small: Lessons from Montana
There's Always Diversity to Cover – Sometimes It Requires a Fresh Look
Advocates share their journeys to give journalists perspective on how to cover equity issues no matter where they are.
What Local Reporters Can Learn from Community Health Programs
Who are the Neighborhood Leaders? Residents.
"Tell the story ... from the perspective of folks that are actually living it," community expert says.
Dr. Willie Underwood: Health Care for the Sum of Us, Not Just Some of Us
Journalists Must Understand the Roots of Health Inequity, Ex-AMA Chair Says
Health disparities could cost the U.S. a trillion dollars by 2040. "We're done if that happens," Dr. Willie Underwood said.
Reporting Guide on Tribal Sovereignty
Legacy Media Often Miss Mark on Native Nations
ICT News reporter Pauly Denetclaw and Montana state senator Shane Morigeau advise reporters on covering indigenous affairs.
‘Now is the Time to Get Vaccinated,’ Experts Say
Individuals Can Now Get Vaccinated for RSV, COVID and the Flu
Anti-vaccine messaging from COVID has "spilled over" to other vaccines. Journalists can help fight misconceptions.
How to Cover the COVID ‘Summer Wave’
Journalists Can Add Context to Covid-19 Mutations
COVID-19 is a "two hump camel," whereas the flu has "one hump" — four experts talk about what this means for vaccinations.
Journalists Should Cover the Medicaid Unwinding for Children, Expert Says
State Policies Can Help Children Stay Enrolled in Medicaid
Children are being wrongly removed from Medicaid insurance, says Joan Alker of the Center for Children and Families at Georgetown University.
Do COVID Treatments Need Better Media Coverage?
Awareness of Paxlovid, PAXCESS Assistance Program Could Be Aided By Journalists, Experts Say
Only 15% of high-risk COVID patients eligible for Paxlovid took it, an NIH study found. Four experts joined a National Press Foundation webinar to tackle awareness and access around antivirals.
Boosting Rare Disease Research with Machine Learning
Machine Learning Speeds Up Rare Disease Diagnosis and Drug Development
Jineta Banerjee of Sage Bionetworks is excited about what machine learning can do for rare disease diagnoses and treatment, but wants journalists to bring skepticism, too.
Preparing for Rare Disease Day 2024
For the 2024 Leap Year, There’s an Extra Day for Journalists to Develop Rare Disease Stories
Lisa Sarfaty of NORD and Lindsey Smith of Osmosis from Elsevier encourage journalists to use their organizations’ resources to connect with patients and develop stories.
The Goal and Success for Renewed European Rare Disease Policy
The 2009 Recommendation Helped Establish the European Reference Networks
Rare 2030 guides the next set of recommendations on rare disease policy in Europe, says Orphanet’s Charlotte Rodwell.
Connecting Biotech and the Social Determinants of Health
Equity and Access Should Influence Rare Disease Innovation
Sika Dunyoh of Travere Therapeutics and Sarita Edwards of The E.We Foundation say rare disease equity must be prioritized in communities and in biotech conference rooms.
Making The Case for Newborn Screening
Can More Access to Testing Provide Faster Answers for Families?
The rare disease diagnostic odyssey often begins at birth. A journalist, a health care advocate and a biotech executive unpack the potential of newborn screening.
Fueling Equity in Clinical Trials
Stakeholders Must Work Together to Make Clinical Research Representative
Community engagement can increase access to clinical trials by centering the social determinants of health, Duke-Margolis Center for Health Policy experts said.
Breaking the Chains of Inherited Rare Diseases
Exploring Shared Biological Mechanisms Could Unlock Cures in Rare Disease Research
Anna Greka’s Broad Institute research identifies scalable tools to address as many rare diseases as possible, to end the burden of complex inherited conditions.
CHOP Professor Breaks Down Gene Therapy for Journalists
Innovative Gene Editing Can Treat Blood Disorders
Researchers focusing on blood disorders have a significant edge when developing rare disease therapies, says Stefano Rivella of the RNA Gene Therapeutics Group.
Can Gene Editing Yield Health Justice?
Rare Disease Experts Must Battle Misinfo, Too. Journalists Can Help.
Gene therapy advances must include historically ignored groups in research and treatment, says Fyodor Urnov, scientific director of the Innovative Genomics Institute.
Fueling Diversity in Rare Disease Research
Equity and Access Have Not Been Priorities in Rare Disease Research – That’s Changing
The Rare Disease Diversity Coalition is advocating for patients of color, said NORD’s Debbie Drell and Linda Goler Blount of the Black Women’s Health Imperative.
When Rare Disease Patients Search Online, What Journalism Do They Find?
‘We Can’t Do This One Disease at a Time’
Journalists can inform and empower rare disease patients, said Eric Sid of the NIH’s GARD Information Center.
