Rare disease news, mapped to the diseases behind the headlines. AI-classified across pipeline, policy, funding, science, and community.
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A heartfelt article discusses the challenges faced by parents of children with rare diseases, emphasizing the desire to make decisions collaboratively with their child rather than for them. It highlights the emotional toll and the need for greater awareness and support for families navigating these difficult circumstances.
A family's journey highlights the emotional impact of their son's diagnosis of Primary Hyperoxaluria Type 1 (PH1). Their story emphasizes the importance of community support and awareness in navigating rare diseases.
A decade of caregiving and activism highlights the importance of collaboration among patient advocates and healthcare providers. The article emphasizes shared experiences and lessons learned to improve care for rare disease patients.
Jenni Nolan, a board-certified patient advocate, emphasizes the need for better support systems for patients navigating rare diseases. She highlights the challenges faced by individuals and families in accessing necessary resources and care.
A singer with neuromyelitis optica spectrum disorder (NMOSD) shares her journey to raise awareness and advocate for accurate diagnosis. Her story highlights the importance of patient voices in the rare disease community.
A new article provides guidance for adults recently diagnosed with a rare disease, emphasizing the importance of mental health and community support. It aims to help patients navigate their diagnosis and adjust to their new reality.
A personal story highlights the journey of living with ALS, emphasizing resilience and community support. The narrative aims to inspire others facing similar challenges.
A personal reflection on living with chronic illness highlights resilience and the importance of celebrating milestones. The author shares their journey of coping with health challenges over the past 15 years.
Today, CDC's Director Rochelle P. Walensky, M.D., M.P.H., signed a decision memo allowing Novavax monovalent COVID-19 boosters for adults.
Today, CDC's Director Rochelle P. Walensky, M.D., M.P.H., signed a decision memo allowing Novavax monovalent COVID-19 boosters for adults.
A personal narrative highlights the challenges faced by individuals with Primary Hyperoxaluria Type 1 (PH1). The story emphasizes the emotional and physical toll of living with this rare disease, aiming to raise awareness and foster community support.
A patient advocacy group collaborated with a family to transform their rare disease experience into a song, raising awareness and support for the condition. This initiative highlights the power of storytelling in the rare disease community.
An article discusses the qualities that differentiate good neurologists from bad ones, emphasizing the importance of effective communication and understanding in patient care. Personal anecdotes highlight the impact of these traits on patient experiences.
Today, the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR), in partnership with the Department of Health and Human Services' Office of Environmental Justice, announce the release of the Environmental Justice Index (EJI).
Today, the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR), in partnership with the Department of Health and Human Services' Office of Environmental Justice, announce the release of the Environmental Justice Index (EJI).
The article emphasizes the need to include rare dental diseases in disability discussions, highlighting personal experiences of individuals affected. It calls for greater awareness and advocacy for those suffering from these conditions.
A personal account highlights the unexpected reactions of castmates after a teacher inadvertently disclosed a student's chronic illness. This story emphasizes the importance of awareness and understanding in community settings.
The Feeding Tube Awareness Foundation highlights that around 20% of children under 18 are tube-fed due to over 350 conditions requiring nutritional support. This article emphasizes the importance of understanding and discussing feeding tubes for families navigating this medical intervention.
This briefing to update you on CDC's 2019 Novel Coronavirus response. We are joined today by Dr. Nancy Messonnier Director of CDC's National Center for Immunization and Respiratory Diseases and rear admiral Denise Hinton from the food and drug administrations, she is the chief scientist.
This briefing to update you on CDC's 2019 Novel Coronavirus response. We are joined today by Dr. Nancy Messonnier Director of CDC's National Center for Immunization and Respiratory Diseases and rear admiral Denise Hinton from the food and drug administrations, she is the chief scientist.
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