Rare Disease Funding Called ‘Modern-Day Civil Rights Issue’
Crowdfunding, Venture Philanthropy and Foundation-Led Capital Reshape the Path to Cures
Because patient populations are small, the traditional health care business model doesn't support investment in rare disease therapies.
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.
Rare Disease Families Need Screening, Genetic Counseling, Advocates Say
Early Detection and Counseling are Game Changers for Rare Metabolic Disorders
Jana Monaco sees the different outcomes that screening and counseling yielded for two of her children living with isovaleric acidemia.
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.
Rare Disease Treatment Requires AI, Patient Participation
Heidi Bjornson-Pennell, a director at Biohub (rebranded from the Chan Zuckerberg Initiative), said AI can help fight rare diseases.
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.
From Son’s Medulloblastoma, a Worldwide Initiative Was Born
The Medulloblastoma Initiative Fast Tracks Research To Help Kids with Cancer
Brazilian businessman Fernando Goldzstein's quest for his son's brain cancer cure Sparked a Global Movement to reduce the diagnostic odyssey toward rare disease diagnoses.
From Agony to Advocacy: Victoria Gray’s Post-CRISPR Journey
How Science Yielded a Reimagined Future for Sickle Cell Survivor
Former sickle cell patient Victoria Gray was joined by NPF alum/science journalist Bijal Trivedi on a trip that would've been unthinkable before CRISPR gene therapy: a Colorado mountain hike.
How CRISPR Gene Editing Saved Baby KJ
Scientific innovation and parental trust conquered an infant's deadly genetic disease
CHOP researchers Rebecca Ahrens-Nicklas and Kiran Musunuru harnessed CRISPR gene editing to save baby KJ Muldoon.
Connecting Biotech’s Promise with Real Progress in the Rare Disease Realm
James Levine of Fondation Ipsen hopes international journalists amplify scientific innovation for the 300 million people with rare diseases.
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.
Workplace Bullying vs. Harassment vs. Toxic Work Environment
Understanding How to Report on Bad Things Happening at Work
Dennis Stolle of the American Psychological Association says 52 million Americans have experienced workplace bullies.
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.
How Job Uncertainty Affects Mental Health
Accepting the New Reality of Uncertain Employment
Psychotherapist Jason Wang explained to NPF journalists how to cover the realities of unstable job markets in the U.S.
Workplace Mental Health Isn’t a Perk – It’s a Must
“Mental health in the workplace is no longer a perk – it’s a strategic imperative," Kathy Pike, CEO of One Mind, told NPF journalists.
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.
‘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 Can Track Effectiveness, from EAPs to Mental Health Apps
How to Cover Human Resource Efforts on Mental Health
"This app is not going to cure your severe mental illness," but the hope is it improves resilience for frontline workers, says Dimagi's Lauren Magoun.
Mental Health Benefits Help Bottom Line, Too
Mental Wellness Programs Aren't Just Good for Employees
McKinsey Health Institute estimates that there's $3.7 trillion to $11.7 trillion of value if all companies invested in employee well-being, says Kana Enomoto.
Responsible Mental Health Reporting: Tips from Journalists
Provide Real Solutions in Your Mental Health Journalism
Covering mental health is challenging. Journalists Judith Warner, Stephanie Foo and Rhitu Chatterjee share their tips for reporting with care.
Workplace Mental Health Efforts That Actually Work
The Framework for Having a Healthy Company is a Culture of Health, Expert Says
"Healthy workers contribute to business success," says Dr. Ron Goetzel of the Johns Hopkins Bloomberg School of Public Health.
Treatment-Resistant Depression is Treatable, But Access is Key
From Esketamine To Psychedelics, It’s ‘An Exciting Time In The Field,’ Experts Say
Low-income communities and communities of color must be engaged when it comes to treatment for depression, says Dr. Lisa Harding.
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.
FDA Approves CRISPR Gene Therapy for Sickle Cell Disease
FDA’s Peter Marks Has Final Regulatory Say on Genomic Therapies
Peter Marks, director of the FDA’s Center for Biologics Evaluation and Research, spoke to NPF journalism fellows about how gene therapies – such as the gene-editing technology CRISPR – are regulated.
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.
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.
Covering the Consequences of Inaction
There’s No Guidebook to Long-Term Care, But Journalists Can Help
There are national systemic consequences within long-term care, Washington Post reporter Christopher Rowland says.
Technology Lends a Hand to Family Caregivers
Technology Helps Caregivers Monitor and Understand the Older Adult’s Status
Assistive technology like robots and smartphones can ease caregiver stress, said Robert Felgar and Nermin Selimic of RAZ Mobility and Anthony Nunez of INF Care.
