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      • Recorded Elective: Metabolic Causes of Encephalopathy
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    • Lectures and Workshops Description
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    • Catalog of Metabolic Disease Video Links
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  • Contact Us
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  • Direct Patient Care
    • Testimonials
    • Services
    • Resources
      • Remote Second Opinions
      • Patient Assistance
      • Forms
    • Contributions
  • Physician Support Services
  • Education Services
    • Upcoming and Past Events
    • Event Details & Schedule
      • Recorded Elective: Metabolic Causes of Encephalopathy
      • Recorded Elective: Metabolic Causes of Stroke
      • 2023.01 Organic Acidemias Online Course
      • 2023.02 Hyperammonemia (Urea cycle disorders PLUS) Online Course
      • 2023.05 Organic Acidemias Online Course
    • Lectures and Workshops Description
    • Inservice Training Description
    • Patient Teacher Registry for Metabolic Disease
      • Request a Patient Teacher from Registry
      • Become a Patient-Teacher
    • Catalog of Metabolic Disease Video Links
      • Patient Video Link Catalog
  • Contact Us
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small microscope

Patient Video Link Catalog

Tags

Disease Class

Disease

PKU Pioneer Dr. Harry Waisman's work still impacts the world.

Amino acid disorders / Phenylketonuria (PKU)

Patient/family experienceSymptomsNewborn screening Diet/treatment

This is an historically significant and dramatic video that discusses the role of Dr. Harry Waisman at the University of Wisconsin in contributing to PKU history, as told by one of his patients (one of the first PKU patients treated in the US) and two providers in the university clinic.

View Video

Grayson McGill’s story – Living with Maple Syrup Urine Disease (MSUD).

Amino acid disorders / Maple syrup urine disease (MSUD)

Patient/family experienceDiet/treatment

This brief video gives a brief overview of MSUD, and the challenges to parents/patients about treatment, like maintaining a strict diet, close medical monitoring, and a disciplinary approach to health care.

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Grayson: A Story about Hope, Inspiration, and Courage – Living with Maple Syrup Urine Disease (MSUD).

Amino acid disorders / Maple syrup urine disease (MSUD)

Patient/family experienceSymptomsDiet/treatment

Grayson’s parents describe well the feelings and challenges around raising a child with a rare disease, like maple syrup urine disease. A medical professional describes the basic pathophysiology of the disease, while Grayson’s parents discuss the challenges of managing his diet. Grayson was also born with a heart defect that needed surgical repair (unrelated to the MSUD); a few comments in this video refer to the heart defect (e.g., regarding the prenatal ultrasound) and not the metabolic condition.

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Meet Charlize.

Organic acidemias / Propionic acidemia (PA)

Patient/family experienceSymptomsNewborn screening Diet/treatment

This video shows the story of a family who had twins born with neonatal-onset propionic acidemia. It describes their struggle and grief, but includes hope about the possibility of a new therapy for this disorder.

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Stronger Together: A Community Effort to Support People with Rare Metabolic Disorders.

Organic acidemias / Propionic acidemia (PA)

Patient/family experienceSymptomsResearch

This clip begins with a general overview of propionic acidemia/organic acidemias, including its symptoms and prognosis, and continues with a description of the Organic Acidemia Association. The last part of the video describes Moderna’s research efforts and collaboration with the patient community.

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Maple syrup urine disease: two video clips of patients with MSUD

Amino acid disorders / Maple syrup urine disease (MSUD)

Patient/family experienceGeneral disease overview SymptomsNewborn screening Diet/treatmentPrognosis

  1. Living with MSUD – Diagnosis and early life - http://www.expandedscreening.org/site/home/metabolic-msud-video.asp?v=2&t=1
  2. MSUD - Baby Habul’s first birthday - http://www.expandedscreening.org/site/home/metabolic-msud-video.asp?v=1&t=1

 

These informative videos offer a peek into the early life of Habul, a baby with maple syrup urine disease, at two different times – in early infancy and again a year later. The mother, along with a number of Habul’s providers, describe the disease severity and complexity, and portray the multi-dimensional approach needed to manage a child with a genetic metabolic disease

(address below links to first video)

View Video

Tyrosinemia: Ultra-Rare, Life-Threatening, and Treatable

Amino acid disorders / Tyrosinemia type I

Patient/family experienceGeneral disease overview SymptomsDiagnostic testing Newborn screening BiochemistryDiet/treatment

This video is a talk show-style interview with the parents of a child diagnosed with tyrosinemia type I and a genetic metabolic expert. The clip showcases the family’s journey from newborn screening to the diagnosis to the creation of a disease foundation. A physician expert provides some scientific background on the disease and its treatment, and discusses the role of newborn screening in identifying patients.

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Living with Tyrosinaemia.

Amino acid disorders / Tyrosinemia type I

Patient/family experienceGeneral disease overview SymptomsBiochemistryPathophysiologyDiet/treatmentPrognosis

This video showcases the history of several young patients with hepatorenal tyrosinemia and the impact of the disease on their families. The patients’ mothers talk about their early symptoms and struggles prior to starting therapy; a treating liver specialist provides a medical perspective on the children’s condition.

View Video
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