Krabbe Facts (@krabbefacts) 's Twitter Profile
Krabbe Facts

@krabbefacts

A collaborative to provide quality information about #Krabbe disease. Educational purposes - not intended for medical advice, diagnosis, or treatment.

ID: 1637873808903118865

linkhttps://linktr.ee/krabbefacts calendar_today20-03-2023 17:48:53

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6 Followers

29 Following

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Introducing our partner, the Leukodystrophy Newborn Screening Action Network! They advance newborn screening for leukodystrophies, support families, and foster collaboration. Join us in making a difference! loom.ly/5ErwEvw πŸ’™ #KrabbeFacts #NewbornScreening LDNBSActionNetwork

Introducing our partner, the Leukodystrophy Newborn Screening Action Network! They advance newborn screening for leukodystrophies, support families, and foster collaboration. Join us in making a difference!  loom.ly/5ErwEvw πŸ’™ #KrabbeFacts #NewbornScreening <a href="/LDNBSAction/">LDNBSActionNetwork</a>
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Newborn screening is a test done by the state on all babies shortly after they are born. This testing looks for signs of serious or fatal conditions that need to be found and treated quickly. Learn more loom.ly/RKAH3dg @ldnbsactionnetwork #NewbornScreening #KrabbeFacts

Newborn screening is a test done by the state on all babies shortly after they are born. This testing looks for signs of serious or fatal conditions that need to be found and treated quickly. Learn more loom.ly/RKAH3dg

@ldnbsactionnetwork #NewbornScreening #KrabbeFacts
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πŸ”¬ Curious about "enzyme assay" in medicine? Let's uncover its importance! βš–οΈ It's a blood test measuring enzyme levels. Abnormal results aid diagnosis. πŸ“š Learn more about enzyme assays at loom.ly/H90V3vg #KrabbeFacts #EnzymeAssay #MedicalTesting

πŸ”¬ Curious about "enzyme assay" in medicine? Let's uncover its importance!

βš–οΈ It's a blood test measuring enzyme levels. Abnormal results aid diagnosis.

πŸ“š Learn more about enzyme assays at loom.ly/H90V3vg

#KrabbeFacts #EnzymeAssay #MedicalTesting
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🧬 Krabbe disease can appear in families without a known history. It's an autosomal recessive condition. Not all children of carriers have Krabbe disease. Undetected carriers span generations. More FAQs at loom.ly/WbpToMo #KrabbeFacts #KrabbeDisease #FamilyHistory

🧬 Krabbe disease can appear in families without a known history. It's an autosomal recessive condition. Not all children of carriers have Krabbe disease. Undetected carriers span generations. More FAQs at loom.ly/WbpToMo

#KrabbeFacts #KrabbeDisease #FamilyHistory
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FAQ: Can I pass Krabbe to my children if I have Adult Onset Krabbe Disease? 🧬 In Krabbe disease, both parents must have non-working GALC gene copies for a child to be affected. πŸ”¬ Learn more at loom.ly/RKAH3dg #KrabbeFacts #KrabbeDisease #Genetics #Inheritance

FAQ: Can I pass Krabbe to my children if I have Adult Onset Krabbe Disease?

🧬 In Krabbe disease, both parents must have non-working GALC gene copies for a child to be affected. 

πŸ”¬ Learn more at loom.ly/RKAH3dg

#KrabbeFacts #KrabbeDisease #Genetics #Inheritance
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With Krabbe disease, you may see references to "CSF" on a report. Cerebral spinal fluid, or CSF, is the fluid surrounding the brain and spinal cord. Testing CSF can provide insights into brain levels. Learn more loom.ly/H90V3vg #KrabbeFacts #CerebralSpinalFluid #CSF

With Krabbe disease, you may see references to "CSF" on a report. Cerebral spinal fluid, or CSF, is the fluid surrounding the brain and spinal cord. Testing CSF can provide insights into brain levels.

Learn more loom.ly/H90V3vg #KrabbeFacts #CerebralSpinalFluid #CSF
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πŸ’™ Palliative Care for Krabbe Disease πŸ’™ πŸ’« Specialized medical care that enhances quality of life for patients and families, regardless of disease stage 🌟 Note: Palliative care is distinct from hospice care πŸ“š FAQs: loom.ly/WbpToMo #KrabbeFacts #PalliativeCare

πŸ’™ Palliative Care for Krabbe Disease πŸ’™

πŸ’« Specialized medical care that enhances quality of life for patients and families, regardless of disease stage

🌟 Note: Palliative care is distinct from hospice care

πŸ“š FAQs: loom.ly/WbpToMo

#KrabbeFacts #PalliativeCare
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Center of Excellence (COE) offers specialized expertise vital for patients seeking assistance, and ensures proper care for families. πŸ“š Learn more at loom.ly/WbpToMo #KrabbeFacts #CenterOfExcellence #LeukodystrophyCareNetwork #Expertise #QualityCare

Center of Excellence (COE) offers specialized expertise vital for patients seeking assistance, and ensures proper care for families. πŸ“š Learn more at loom.ly/WbpToMo

#KrabbeFacts #CenterOfExcellence #LeukodystrophyCareNetwork #Expertise #QualityCare
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πŸ”¬ Wondering about "gene" and "DNA"? Let's explore! 🧬 DNA: Genetic material with instructions for life. 🧬 Gene: DNA fragment guiding vital body processes. πŸ“š Learn more about genes, DNA, and related terms at loom.ly/H90V3vg #KrabbeFacts #Gene #DNA #Genetics

πŸ”¬ Wondering about "gene" and "DNA"? Let's explore!

🧬 DNA: Genetic material with instructions for life.

🧬 Gene: DNA fragment guiding vital body processes.

πŸ“š Learn more about genes, DNA, and related terms at loom.ly/H90V3vg

#KrabbeFacts #Gene #DNA #Genetics
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πŸ”Ž Looking for resources for Krabbe Disease? πŸ“š We've compiled a sample list of helpful resources to add to your doctor and hospital resource coordinators. See the full list at loom.ly/n0uSctY #KrabbeFacts #KrabbeDisease KrabbeConnect Hunter's Hope @BeTheMatch

πŸ”Ž Looking for resources for Krabbe Disease?

πŸ“š We've compiled a sample list of helpful resources to add to your doctor and hospital resource coordinators. See the full list at loom.ly/n0uSctY

#KrabbeFacts #KrabbeDisease <a href="/KrabbeConnect/">KrabbeConnect</a>  <a href="/HuntersHopeFDN/">Hunter's Hope</a> @BeTheMatch
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πŸ“„ Have you come across "nerve conduction velocity test" or NCV? ⚑️ NCV is a diagnostic test that measures the speed of electrical signals between nerves to evaluate nerve damage. 🧠 Explore more related terms at loom.ly/H90V3vg #KrabbeFacts #DiagnosticTest #Neurology

πŸ“„ Have you come across "nerve conduction velocity test" or NCV?

⚑️ NCV is a diagnostic test that measures the speed of electrical signals between nerves to evaluate nerve damage.

🧠 Explore more related terms at loom.ly/H90V3vg

#KrabbeFacts #DiagnosticTest #Neurology
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🌟 Introducing our sponsor, Forge Biologics - they empower access to life-changing gene therapies, collaborating with experts to accelerate transformative medicines. Learn more about their approach at loom.ly/c7ZTRjc #KrabbeFacts #ForgeBiologics #GeneTherapy

🌟 Introducing our sponsor, Forge Biologics - they empower access to life-changing gene therapies, collaborating with experts to accelerate transformative medicines. Learn more about their approach at loom.ly/c7ZTRjc 

#KrabbeFacts #ForgeBiologics #GeneTherapy
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πŸ’™ September is Leukodystrophy Awareness Month! πŸ’™ Join us in raising awareness about these rare genetic disorders, including Krabbe disease. Together we're spreading information to educate and support those affected. #LeukodystrophyAwarenessMonth #KrabbeFacts ULF

πŸ’™ September is Leukodystrophy Awareness Month! πŸ’™

Join us in raising awareness about these rare genetic disorders, including Krabbe disease. Together we're spreading information to educate and support those affected.

#LeukodystrophyAwarenessMonth #KrabbeFacts <a href="/UlfUnited/">ULF</a>
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Newborn screening saves lives and is a crucial step taken shortly after birth to detect serious medical conditions. πŸ’™ Help spread awareness and support newborn screening efforts! #NewbornScreeningAwarenessMonth #KrabbeDisease #EarlyDetection #NewbornHealth #KrabbeFacts

Newborn screening saves lives and is a crucial step taken shortly after birth to detect serious medical conditions. πŸ’™ Help spread awareness and support newborn screening efforts!

#NewbornScreeningAwarenessMonth #KrabbeDisease #EarlyDetection #NewbornHealth #KrabbeFacts
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πŸ“š Discover a wealth of resources for Krabbe Disease and related support on KrabbeFacts.org! From caregiver support to patient resources, we've compiled a comprehensive list to assist you. #KrabbeDisease #RareDisease #PatientSupport #CaregiverResources #KrabbeFacts

πŸ“š Discover a wealth of resources for Krabbe Disease and related support on KrabbeFacts.org! From caregiver support to patient resources, we've compiled a comprehensive list to assist you. 

#KrabbeDisease #RareDisease #PatientSupport #CaregiverResources #KrabbeFacts
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πŸ”¬ Fibroblasts, residing in the skin and connective tissue, play a crucial role in our bodies. When it comes to testing, they can provide valuable insights into tissue health that blood tests may not capture fully, especially after a stem cell transplant. #KrabbeFacts

πŸ”¬ Fibroblasts, residing in the skin and connective tissue, play a crucial role in our bodies. When it comes to testing, they can provide valuable insights into tissue health that blood tests may not capture fully, especially after a stem cell transplant. #KrabbeFacts
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πŸ”Ž State doesn't screen for Krabbe Disease? Through Supplemental NBS, your child can be screened no matter where they are born. Hunter's Hope offers discounted packets. Click to access the kit: loom.ly/MKQpo-w #KrabbeFacts #NewbornScreening #SupplementalNBS

πŸ”Ž State doesn't screen for Krabbe Disease? Through Supplemental NBS, your child can be screened no matter where they are born. 

<a href="/HuntersHopeFDN/">Hunter's Hope</a> offers discounted packets. Click to access the kit: loom.ly/MKQpo-w

#KrabbeFacts #NewbornScreening #SupplementalNBS
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🧠 Discover the Myelin Sheath: this essential layer plays a crucial role in facilitating proper nerve signal transmission and maintaining the health of our nervous system. πŸ”¬ Learn more at KrabbeFacts.org #MyelinSheath #NervousSystem #KrabbeDisease #KrabbeFacts

🧠 Discover the Myelin Sheath: this essential layer plays a crucial role in facilitating proper nerve signal transmission and maintaining the health of our nervous system. 

πŸ”¬ Learn more at KrabbeFacts.org

#MyelinSheath #NervousSystem #KrabbeDisease #KrabbeFacts
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🌟 Introducing our sponsor, Passage Bio! They develop transformative therapies for CNS disorders with limited treatments. Learn more at loom.ly/Ppuc8dk 🌍✨ #KrabbeFacts #PassageBio #GeneticMedicines #TransformativeTherapies

🌟 Introducing our sponsor, Passage Bio! They develop transformative therapies for CNS disorders with limited treatments. Learn more at loom.ly/Ppuc8dk 🌍✨ #KrabbeFacts #PassageBio #GeneticMedicines #TransformativeTherapies
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πŸ”¬ Curious about "Tandem mass spectrometry" or "MS/MS" in medical discussions? πŸ“Š Measures metabolites like amino acids & acylcarnitines in the body βš–οΈ Detecting imbalances aids diagnosis, incl. Krabbe disease πŸ”— Learn more at loom.ly/H90V3vg #KrabbeFacts #MSMS

πŸ”¬ Curious about "Tandem mass spectrometry" or "MS/MS" in medical discussions?

πŸ“Š Measures metabolites like amino acids &amp; acylcarnitines in the body

βš–οΈ Detecting imbalances aids diagnosis, incl. Krabbe disease

πŸ”— Learn more at loom.ly/H90V3vg #KrabbeFacts #MSMS