Presentations from the 2020 Hunter’s Hope Virtual Symposium

Click Here to view presentations from the 2020 Hunter’s Hope Symposium.

Leukodystrophy Disease Information

The following presentations were created and presented by Leukodystrophy Care Network (LCN) Care Coordinators and Family Advocates for the LCN 2020 Winter Meeting in Atlanta, GA. The PPTX version is a Powerpoint saved in PDF format. The Video versions are the Powerpoint presentations with voice over. We hope you find them helpful in learning more about Leukodystrophies.

A Family Perspective by Amy May

Adrenoleukodystrophy ALD Video

Adrenoleukodystrophy ALD PPTX

Aicardi-Goutières Syndrome (AGS) Video – Coming Soon

Aicardi-Goutières Syndrome (AGS) PPTX

Alexander Disease Video – Coming Soon

Alexander Disease PPTX

CTX – Coming Soon

Krabbe Disease Video – Coming Soon

Krabbe Disease PPTX

Krabbe Disease Newborn Screening Video

Metachromatic Leukodystrophy (MLD) Video

Metachromatic Leukodystrophy (MLD) PPTX

PMD – Coming Soon

Vanishing White Matter – Coming Soon

4H, Hypomyelinating Disease, Other LDs – Coming Soon


Clinical Practice Guidelines (CPGs)

Leukodystrophy CPGs establish a published, peer-reviewed standard of care to ensure that individuals with Leukodystrophy have the best possible medical care, improving length and quality of life.

Newborn Screening (NBS)

Infantile Krabbe Disease Consensus Guidelines for NBS

Later Onset Krabbe Disease Consensus Guidelines for NBS – Coming Soon

Diagnosis

Coming Soon…

Treatment

Hematopoietic Stem Cell Transplantation to Treat Leukodystrophies


Symptom Management

Neurology

Coming soon…

Musculoskeletal

Coming soon…

Pulmonary

Coming soon…