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3 articles from the last 90 days matching "blood disorder"

Clinical trialCLINICALTRIALSApr 30

New Clinical Trial: A Multi-Dimensional Model of cAre and transItion for Patients With cOmplex RAre Diseases (NCT07558213)

Researchers are studying a new care model designed to help patients with complex rare diseases get better coordinated treatment and support. The trial involves 136 patients with conditions like mitochondrial diseases and muscular dystrophies. The goal is to bridge the gap between scientific discoveries and actual patient care by creating a more organized system for managing these complicated conditions.

WHY IT MATTERSThis trial is testing a coordinated care approach specifically for patients with multiple rare diseases or complex symptoms, which could improve how you receive care across different specialists and reduce the fragmentation many rare disease patients experience.
ℹ Good to knowMitochondrial DiseasesMuscular DystrophiesDysmorphic Disorder
AdvocacyRSSApr 27

Paying attention to how we treat children with an invisible illness

A personal story about a man named Jared who has severe hemophilia B (a bleeding disorder) and seizures since childhood. The article highlights how teachers and classmates treated him as 'special' or different on his first day of fifth grade, showing how invisible illnesses can affect children socially and emotionally, not just physically.

WHY IT MATTERSChildren with hemophilia B and other invisible illnesses often face social stigma and misunderstanding in school settings, which can impact their mental health and quality of life as much as the medical condition itself.
ℹ Good to knowHemophilia BSeizure disorder
AdvocacyRSSApr 22

Guest Voice: When Parkinson’s disease and bipolar disorder collide

This article is a personal account from someone living with both Parkinson's disease and bipolar disorder at the same time. The author discusses how having these two conditions together creates unique challenges for their mental and physical health. The piece highlights the importance of addressing mental health alongside neurological symptoms in Parkinson's care.

WHY IT MATTERSPatients with Parkinson's disease who also have bipolar disorder often face overlooked mental health needs, as treatment plans may focus primarily on movement symptoms while psychiatric care gets deprioritized.
💬 Ask your doctorParkinson's diseaseBipolar disorder

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