CHARGE Syndrome – Talk Bio

Sarepta Stands Ground Against HHS Request To Stop Elevidys Shipments

3 days ago talkbio0Tagged AAVrh74, CHARGE Syndrome, drug safety, ELEVIDYS, gene therapy, Muscular Dystrophy, Duchenne, patient deaths, Regulatory Action, Ships, Suspensions, United States Food and Drug Administration

Sarepta; Elevidys; FDA; HHS; gene therapy; Duchenne muscular dystrophy; drug safety; shipping suspension; patient deaths; AAVrh74; regulatory action

RFK Jr. Reshuffles Top HHS Leadership, Replacing Chief of Staff and Deputy Chief

1 week ago talkbio0Tagged Buckham, Changing, CHARGE Syndrome, chief of, federal, Hannah Anderson, Health Policy, Heather Flick Melanson, Leadership, RFK Jr., Shakeup, Staff, TMEM79 gene

RFK Jr.; HHS; leadership shakeup; chief of staff; Heather Flick Melanson; Hannah Anderson; Matt Buckham; staff changes; federal health policy

RFK Jr. Fires Top HHS Leadership in Major Department Shakeup

1 week ago talkbio0Tagged Buckham, CHARGE Syndrome, Hannah Anderson, Health Policy, Heather Flick Melanson, Leadership, RFK Jr., Shakeup, Staff, TMEM79 gene, White House liaison

RFK Jr.; HHS; leadership shakeup; chief of staff replaced; Heather Flick Melanson; Hannah Anderson; Matt Buckham; health policy; White House liaison

RFK Jr. Cancels USPSTF Meeting Amid Healthcare Groups’ Integrity Concerns

2 weeks ago talkbio0Tagged CHARGE Syndrome, Congress (U.S. Legislature), expert, Health Policy, meeting cancellation, Preventive Care, RFK Jr., USPSTF

RFK Jr.; USPSTF; meeting cancellation; preventive care; health policy; HHS; Congress; expert panel integrity

RFK Jr. Ousts All Members of CDC’s Vaccine Advisory Panel in ‘Clean Sweep’

1 month ago talkbio0Tagged ACIP, Centers for Disease Control and Prevention (U.S.), CHARGE Syndrome, clean sweep, public trust, RFK Jr., Robert F. Kennedy Jr., vaccine advisory panel

RFK Jr.; CDC; vaccine advisory panel; Robert F. Kennedy Jr.; ACIP; clean sweep; public trust; HHS

Ex-HHS Workers Accuse Trump Administration of Using Flawed Data to Justify Mass Firings

2 months ago talkbio0Tagged Agencies, CHARGE Syndrome, disability services, firings, Medicare, Project, public servants, Trump administration

HHS firings; Trump administration; federal workforce; flawed data; Project 2025; agency cuts; disability services; Medicare; public servants

Trump Administration Cancels Major Federal Funding for Moderna’s Bird Flu Vaccine

2 months ago talkbio0Tagged Administration occupational activities, bird flu vaccine, cancellation, CHARGE Syndrome, H5 avian influenza, HHS, Moderna, mRNA Vaccine, pandemic preparedness, Transplant Registry Unified Management Program

Trump administration; Moderna; bird flu vaccine; HHS; funding cancellation; mRNA vaccine; pandemic preparedness; H5 avian influenza

RFK Jr. Ends CDC Covid Vaccine Recommendations for Healthy Children and Pregnant Women

2 months ago talkbio0Tagged Centers for Disease Control and Prevention (U.S.), CHARGE Syndrome, Child, COVID19 (disease), Pregnant Women, public health policy, Recommendation, RFK Jr., Secretary, Vaccines

RFK Jr.; COVID-19 vaccine; recommendations; children; pregnant women; CDC; HHS Secretary; public health policy

HHS: All Branded Drugs Without Generic or Biosimilar Competition Must Abide by MFN Order Across All Markets

2 months ago talkbio0Tagged biosimilar competition, branded drugs, CHARGE Syndrome, Country, Drug Industry, drug price, executive order, Generic competition, most-favored, Organisation for Economic Co-Operation and Development

most-favored nation pricing; branded drugs; generic competition; biosimilar competition; HHS; executive order; drug pricing; pharmaceutical industry; OECD countries

‘Go ahead and do it’: Top RFK Jr. Deputy Dares Drugmakers Over Threats to Pull Manufacturing Amid Price Pressure

2 months ago talkbio0Tagged Big Pharma, Calley Means, CHARGE Syndrome, Drug Industry, drug price, executive order, HHS, Manufacturing, Prices, RFK Jr., Roche (company), threat

RFK Jr.; drug pricing; Calley Means; HHS; pharmaceutical industry; manufacturing threats; Roche; executive order; price limits; Big Pharma