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.
Ai-Jen Poo: Caregiving ‘Became My Obsession’
Ai-Jen Poo of the National Domestic Workers Alliance Describes Experience with Grandparents
Unpaid family caregivers outnumber paid long-term workers tenfold, leading many to ask: Who's caring for the caregivers?
Caring for Parents: When Love Is Not Enough
The Demands Can Often Outweigh the Commitment to Loved Ones
Veteran NPR Producer Kitty Eisele could not prepare for the toll that caring for her father Al would take. Her podcast gives voice to the struggles that families face.
Caregiving Conundrum: Burden or Blessing?
Americans Want to Level Up as Caregivers-But They’re Flying Without a Net
Family caregivers face dire economic and health consequences from caring for loved ones, but many also find a sense of purpose or fulfillment, says Jason Resendez of National Alliance for Caregiving.
Long-Term Care Insurance, Costs Need Journalists’ Attention
Keeping Score on Progress and Policies to Support Caregiving
Washington Post’s Michelle Singletary and SCAN Foundation President Sarita Mohanty urge journalists to demystify caregiving costs.
Richard Lui Talks Caregiving In the Newsroom and In Our Families
‘Unconditional’ Film Shows ‘America in the Context of Caregiving,’ MSNBC’s Richard Lui Says
MSNBC’s Richard Lui and Alex Lo of NBC were caregivers for their own family members. Then, they made films about caregivers across the country.
Bracing for Impact: The Long-Term Care Crisis Unpacked
'Our System is Messed Up. Our Caregivers Are Overburdened.'
Americans need more support, say Debra Whitman and Susan Reinhard of AARP.
Dementia Caregivers Face Knowledge, Resource Gap
Caring for someone with dementia costs a family $80K a year, Sandeep Jauhar says
Dr. Sandeep Jauhar wrote “My Father’s Brain” about his family’s experience with Alzheimer's – including his own struggles as a caregiver.
‘Is My COVID Vaccine Covered?’ It Should Be.
The COVID Vaccine is Recommended by ACIP. Now What?
For updated COVID vaccine access, pharmacies will be where the “friction” is in the weeks ahead, doctor says.
It Takes a Village to Raise Healthy Children
Journalists Should Explore the Community’s Responsibility to Improve Health Outcomes
Good health for kids requires much more than annual check-ups. Dr. Roopa Thakur of the Cleveland Clinic unpacks the social determinants of life-long good health.
Long COVID in Children: An Open Question
Diagnosing and Treating Long COVID in Children from all Backgrounds
Is long COVID menacing American children? University Hospitals pediatric researchers Amy Edwards and David Miller explore an important new angle in child health.
Navigating LGBTQ+ Legislation Coverage
Who’s Really Affected by Gender Affirming Care Policies?
Statehouse debates are just one angle of the story. Include voices that might not testify in a legislative hearing, AP Capitol Correspondent Andrew DeMillo said.
Covering Health Care for Undocumented Families
Health Care for Child Immigrants is Safe For Now, Experts Say
Undocumented parents often don’t seek health care for fear of deportation. Journalists can help kids stay covered, experts from the Children’s Defense Fund Texas said.
HIPAA Doesn’t Cover Everything
What Journalists Need to Know about Healthcare Privacy
Your WebMD searches, Apple Watch metrics, Noom app, cancer support group on Facebook – none of these are covered by HIPAA. How journalists can help protect and educate consumers.
Reporting Fueled By Passion and Compassion
Patience and Empathy Are Key Ingredients For Impactful Rare Disease Coverage
Earning the trust of families and patients fuels impactful reporting, said journalists Rob Stein of NPR and Elizabeth Merab of Nation Media Group Kenya.
Abortion Data Privacy in Post-Roe America
Beyond Period Trackers: What Journalists Need to Know After Dobbs
Dr. Jamila Perritt of Physicians for Reproductive Health, Rachana Pradhan of Kaiser Health News and Jordan Wrigley of Future of Privacy Forum explain how data poses risks for those seeking abortion.
Medical Devices Get Cybersecurity Upgrade
Protecting Medical Devices That Transmit Patient Data from Hacking, Ransomware
Everything is hackable, and U.S. regulation of healthcare security devices is lagging, experts say.
What is the Internet of Bodies?
Beyond Smartwatches and Pacemakers, New Devices Collect Biometric Data with Patchy Regulation
Wearable, ingestible and implantable devices might know if you drank too much last night, didn’t take your meds or aren’t paying attention. Who’s regulating them?
Rare Disease Through the Ethics and Equity Lens
Beneficial Rare Disease Research and Treatments Must Reach All Who Need Them
True progress in rare disease research will mean more access and inclusion in studies and treatment for marginalized groups, leading academic researchers said.
Fueling a Healthy Multigenerational Workplace
Fueling Intergeneration Understanding and Cooperation in the Workforce
Ageism rules in the multigenerational workplace, costing the American economy billions. Experts weigh in on how to stop the loss of dollars and talent.
Geography Matters in Rare Disease Research
Access and Genomic Resources are Scarce in Many Regions of the World
Journalists should balance perspectives to paint an authentic picture, genomics researchers advise.
Explosive Growth in Rare Disease Treatments
Molecules that used to be identified in test tubes are now discovered by computers.
Bringing rare disease drugs to market used to take 20 years. Now an “explosion of advancement” promises a faster pipeline, a senior NIH bone researcher explains.
Saluting Rare Disease Heroes
Journalists Are the Experts in Amplifying Rare Disease Journeys
Scientists may analyze rare diseases, but only journalists can amplify the realities for patients and families, Fondation Ipsen President James Levine said.
The Future Looks Bright
10 Therapies Are FDA Approved, Research Advances Suggest More to Come
A “robust global pipeline” of gene therapy treatments raises hope for rare diseases patients, U.S. Food and Drug Administration’s Peter Marks said.
Empowering Rare Disease Patients Through Advocacy and Counseling
Helping Journalists Tell Stories That Humanize Rare Disease Patients
Rare disease patients and journalists can learn and benefit from each other. Experts in genetic counseling and advocacy explain how.
Confronting Barriers to Rare Disease Treatment
Rare Disease Research Needs More Empathy and Respect for Patient Challenges
The extraordinary potential for rare research advances is often stymied by issues of access and regulation, says Ultragenyx President and CEO Emil Kakkis.
Improving Diagnosis of Rare Disorders
The Undiagnosed Diseases Network Pushes for Answers
Families know there are many more rare diseases than those already identified. The Undiagnosed Diseases Network is closing the knowledge gap, helping more families find answers.
The Future is Now in Rare Disease Research
Genomic Advances Signal Great Promise for Rare Disease Research
Advances in genomic research could lead to better rare disease treatments, NHGRI Director Eric Green says.
Newborn Screening, Genetic Testing Varies by State
How Reporters Can Cover Inequity in Rare Disease Diagnosis
Many journalists know newborns are screened for rare diseases, but may not realize the “death by zip code” phenomenon.
NBC’s Richard Engel on Battling Rare Disease
A War Correspondent Reports the Ultimate Loss: His Child’s Death from a Rare Disease
Lead with empathy, advises Richard Engel. After the death of his son Henry, he urges more attention to rare diseases. They turn out to be not so rare.