Skip to content
KFF Health News KFF Health News KFF Health News KFF Health News
Donate
  • Donate
  • Connect With Us:
  • Contact
  • X
  • Facebook
  • LinkedIn
  • Instagram
  • RSS
  • Trump 2.0
    • Agency Watch
    • Medicaid Watch
    • State Watch
    • Rural Health Payout
  • Public Health
  • Race & Health
  • Audio
    • KFF Health News Minute
    • What the Health?
    • Health Care Helpline
    • An Arm and a Leg
    • Silence in Sikeston
    • Epidemic
  • Investigations
    • Bill Of The Month
    • Deadly Denials
    • The Body Shops
    • Broken Rehab
    • Guns, Race, and Profit
    • Dead Zone
    • Payback: Tracking Opioid Cash
    • Overpayment Outrage
    • Diagnosis: Debt
    • ALL INVESTIGATIONS
  • More Topics
    • Abortion
    • Aging
    • Climate
    • COVID-19
    • Health Care Costs
    • Insurance
    • Medicaid
    • Medicare
    • Mental Health
    • Pharma
    • Rural Health
    • Uninsured

Jared Whitlock

A family photo shows Jacob Boggs holding his daughter Emma and standing next to his daughter Riley and his wife Courtney Boggs.

Parents Become Drug Developers to Save Their Children’s Lives

By Jared Whitlock July 21, 2022 KFF Health News Original

Families affected by ultra-rare diseases are starting their own companies to speed the development of treatments for their kids, venturing into territory that traditional drugmakers deem too risky.

  • Share on X (Opens in new window) X
  • Share on Facebook (Opens in new window) Facebook
  • Share on LinkedIn (Opens in new window) LinkedIn
  • Email a link to a friend (Opens in new window) Email
  • Print (Opens in new window) Print

Latest Morning Briefing Stories

  • Research Roundup: The Latest Science, Discoveries, And Breakthroughs Mar 5

  • Missouri Lawmaker: Money Meant For Needy Sent To Anti-Abortion Centers Mar 5

  • Viewpoints: GLP-1s Not Ready To Treat Addictions; AI Could Solve Antibiotic Resistance, If The Market Allows It Mar 5

  • A Month After Launch, TrumpRx Faces Lack Of Metrics, Drug Availability Mar 5

  • Study: GLP-1s May Help Fight Addiction To Smoking, Alcohol, Opioids Mar 5

Email Sign-Up

More From KFF Health News

The back of a mother, father, and young baby being held by its mother. They are embracing.

As ICE Moved In, Minnesotans Set Up a Shadow Medical System. It’s a Lesson for Other Cities.

What the Health? From KFF Health News: 40 Years of Health Policy

Two men sort racks of clothes in a Goodwill store.

Trump’s Cuts to Medicaid Threaten Services That Help Disabled People Live at Home

A photo of health insurance paperwork with a stethoscope and calculator resting on top.

Listen: What To Do When Health Insurance Slips Out of Reach

KFF

© 2026 KFF. All rights reserved.

  • About Us
  • Donate
  • Contact Us
  • Editorial Policy
  • Privacy Policy
  • Staff
  • Republish Our Content
  • Email Sign-Up
  • X
  • Facebook
  • LinkedIn
  • Instagram
  • RSS

Powered by WordPress VIP

Thank you for your interest in supporting KFF Health News, the nation’s leading nonprofit newsroom focused on health and health policy. We distribute our journalism for free and without advertising through media partners of all sizes and in communities large and small. We appreciate all forms of engagement from our readers and listeners, and welcome your support.

KHN is an editorially independent program of KFF (Kaiser Family Foundation). You can support KHN by making a contribution to KFF, a non-profit charitable organization that is not associated with Kaiser Permanente.

Click the button below to go to KFF’s donation page which will provide more information and FAQs. Thank you!

Continue