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.
The Orphan Drug Act at 40
Over 800 Approved Orphan Indications Since the 1983 Orphan Drug Act Passage
Four decades of Orphan Drug Act momentum amplifies the need for broader access to treatment of rare diseases, say NORD’s Karin Hoelzer and Fondation Ipsen’s James Levine.
Conquering Sickle Cell with CRISPR: Victoria Gray’s Story
Rare Disease Patient Embodies Remarkable Promise of Gene Therapy
As the first sickle cell patient treated with CRISPR, Victoria Gray moved from agonizing pain toward an astonishing cure. Ghanaian journalist Portia Gabor relishes telling stories like hers.
Family Caregivers Need More Support
Look At What Benefits Employers Are Providing
Journalists should help explain ‘the why’ behind the problems within caregiving, says The Wall Street Journal’s Clare Ansberry.
Reforming Nursing Homes is Priority, Says State Policy Expert
Look at States Like New Jersey and Ohio’s Nursing Home Reform Policy
Aging is a priority for the National Academy for State Health Policy, says Hemi Tewarson.
The Intersectionality of Long-Term Caregiving
Race and Ethnicity Have Affected Policy – and Long-Term Care Options
Black adults see inequity as they age due to the systemic history of racism, says Karyne Jones.
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.
Addressing Equity in Long-Term Care
The Need for Supportive Services and Caregiving Options for Marginalized Communities
There’s a lack of options in long-term care and services, yet ‘choice is key,’ says Rita Choula of AARP and Joon Bang of Iona Senior Services.
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.
Lauren Miller Rogen Speaks Out on Mom’s Alzheimer’s
Why She and Husband Seth Rogen Founded Hilarity for Charity
Lauren Miller Rogen and James Keach hope their upcoming documentary will inspire and motivate millions of families coping with Alzheimer’s.
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.
Healing Children by Healing Communities
University Hospitals’ Program Fosters Strength in Fragile, Violence-Plagued Communities
Edward Barksdale knows how to mend a wounded heart. But the Surgeon-in-Chief at Rainbow Babies and Children’s Hospital also vows to heal traumatized communities.
Real Talk About Why American Children Are Obese
Viewing the Root Causes through a Public Health Lens
Childhood obesity can be treated, but the social determinants of health hold more sway than surgery or nixing sugary soda, says the Cleveland Clinic’s Dr. Roy Kim.
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.
As Workplace Mental Health Worsens, Some Companies Step Up
Need a Mental Health Day?
Toxic bosses, burnout, turnover and unionization prompt new emphasis on workplace well-being.
How Will Intellectual Property Affect COVID Inequity?
The Debate Raises Questions of Ethics, Nationalism and Innovation
The WTO compromise on a Trade-Related Aspects of Intellectual Property Rights (TRIPS) waiver has not settled the debate.
Does Poverty Affect Human Epigenetics?
Or Vice Versa?
While TikTok videos about epigenetics and trauma rack up millions of likes, the science continues to evolve.
Reporting on Kids and the COVID Vaccine
Cutting Through Misinformation
Tips for reporters covering the coronavirus vaccine for children — and how it will impact families, schools and more.
AI Driving Breakthroughs on Rare Diseases
Deep Learning, Genomics Spur Advances in Understanding and Hope for Treatment
But journalists should also focus on regulation of the AI and electronic medical records that underlie biotech gains.
Governments Spur Rare Disease Treatments
US and EU Laws Have Led to Rare Disease Gains
In the U.S., the Orphan Drug Act incentivizes drugmakers to develop drugs for rare disease patients, including 31 in 2020.
Rare Diseases: A Global Challenge
When Each Nation Has Few Cases of Each Disease, Collaboration Is Key
From Ghana to Australia, rare disease researchers and patient groups prod their governments to action — and international cooperation.
Covering Rare Diseases with Sensitivity (for fellows)
Nearly 8% of the world’s population — 350 million people — have a rare disease. But diagnosis and treatment are advancing.
