Ketotic Hypoglycemia International names new CEO in leadership shake-up

Ketotic Hypoglycemia International said July 29, 2026, that founder Danielle Drachmann will move to president while Amanda Roser becomes CEO. The nonprofit is aiming to expand awareness, research and family support for ketotic hypoglycemia, a condition that is common in children but often misunderstood and underdiagnosed.

Why it matters: - Ketotic hypoglycemia is one of the most common causes of low blood sugar in children, but families often face delayed diagnoses, inconsistent care guidance and limited clinical resources. - Ketotic Hypoglycemia International said the leadership change is meant to accelerate awareness, research and global impact for children and families affected by idiopathic ketotic hypoglycemia.

What happened: - Ketotic Hypoglycemia International announced a leadership transition on July 29, 2026, in Dallas. - Founder Danielle Drachmann will move from chief executive officer to president and founder. - Amanda Roser has been named chief executive officer. - Jacob Petersen will remain chairman of the board. - Petersen also serves full time as senior vice president and head of global research at Novo Nordisk.

The details: - Drachmann will continue to guide the organization’s mission and long-term vision. - Roser brings nearly two decades of experience in marketing, operations and organizational growth. - Roser also has a personal connection to patient advocacy. - KHI said the organization will focus on global awareness through digital education, social media and community engagement. - KHI plans to advance research and clinical collaboration through publications, physician partnerships and data-driven insights. - KHI plans to launch its first U.S.-based conference in 2027 for clinicians, researchers, industry leaders and families. - KHI will introduce a physician-led webinar series to expand education and clinical dialogue. - KHI also plans to improve its digital infrastructure, including website optimization and resources for families and healthcare providers. - KHI said it will expand partnerships with healthcare organizations, nutrition companies and rare disease stakeholders. - KHI will continue operating as a 100% volunteer-driven nonprofit. - The group plans to expand structured volunteer opportunities in marketing, fundraising, research support and community engagement.

Between the lines: - The transition signals a move from a grassroots support network toward a more structured advocacy organization. - KHI is trying to bridge the gap between families and the medical community, which could help shorten time to diagnosis and improve care pathways. - Roser said the organization sees an opportunity to scale support for families while accelerating clinical understanding. - Drachmann said the group began as a personal search for answers and has grown into a global community.

What's next: - KHI expects its new leadership team to push forward on education, research and partnerships. - The nonprofit’s 2027 conference will be a major next milestone. - KHI also plans to grow its volunteer base and expand its digital resources for families and clinicians.

The bottom line: - KHI is betting that a new CEO and a broader operating plan will help turn a niche family support effort into a larger force in rare disease advocacy.