CDC updated updated its adult and child immunization schedules to apply individual-based decisions

Global Genes releases a Quick Guide aimed at helping advocates establish nonprofit patient advocacy organizations. This resource addresses key challenges and provides actionable insights for those looking to make a difference in the rare disease community.

The U.S. government entered a shutdown on October 1 due to Congress failing to pass appropriations for the 2026 fiscal year. The duration of the shutdown remains uncertain, potentially impacting federal operations and funding for various programs.

The RARE Advocacy Exchange Session 7 focused on the importance of obtaining precise genetic diagnoses for rare diseases. This session, held on September 18, 2025, highlights ongoing efforts to improve patient outcomes through better genetic understanding.

We extend our deepest condolences to Suzy's family, her friends, and all who cared about her.

CDC Expands Listeria Outbreak Alert to Include Additional Prepared Foods

The CDC has expanded its investigation into a Listeria outbreak, now reporting 3 additional illnesses and 1 more death linked to prepared meals. This raises awareness about food safety and the importance of monitoring outbreaks.

New CDC data shows U.S. cases of newborn syphilis increased for the 12th consecutive year in 2024

Global Genes hosts the RARE Advocacy Exchange Session 6, focusing on the unique grief associated with rare disease diagnoses. This session aims to provide support and understanding for those affected by the emotional challenges of living with rare conditions.

A CDC report found a dramatic increase in a dangerous type of drug-resistant bacteria.

A student shares insights from the 2025 RARE Drug Development Symposium, highlighting key lessons on collaboration and innovation in rare disease drug development. The perspective emphasizes the importance of engaging young minds in the conversation around rare diseases.

Michael Fletcher, a passionate advocate for quit-smoking efforts, has passed away

EURORDIS has opened applications for the Open Academy School 2026, aimed at training and connecting individuals in the rare disease community. This initiative seeks to enhance leadership and advocacy skills among participants.

Sixteen people in ten states have gotten sick from the same strain of Salmonella.

95 people from 14 states have gotten sick from the same strain of Salmonella.

Global Genes releases a Quick Guide to Genetic Diagnosis aimed at empowering advocates to address challenges in genetic testing and diagnosis. This resource is designed to enhance understanding and advocacy efforts in the rare disease community.

HHS Secretary Robert F. Kennedy, Jr. visited CDC headquarters in response to tragic gunfire attack

CDC launches Free Mind campaign providing teens with resources about substance use and mental health

Christine Brader, a champion of anti-smoking efforts, has passed away at 62

Susan Monarez, Ph.D., was sworn in today as Director of the CDC