Krabbe Support Navigator

Krabbe Support Navigator

The Krabbe Support Navigator provides free and confidential support for families
navigating a Krabbe Disease diagnosis, any time, any day.

1-800-XXX-XXXX

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Hunter’s Hope is committed to giving hope through education and awareness, research, and family care
for Leukodystrophies and Newborn Screening for Every Child. Every time. Everywhere.

Learn more about Hunter’s Hope here.
Contact us: 716-667-1200 | info@huntershope.org

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Krabbe Connect is dedicated to connecting patients, caregivers, healthcare providers, and researchers with the
support and resources needed to optimize health, wellness, and advances in care.

Learn more about Krabbe Connect here.
Contact us: 1-800-800-5509 | info@KrabbeConnect.org

ULF

ULF is focused on providing support to the leukodystrophy community and enable platforms to accelerate, improving patient quality of life, and finding cures.

Learn more about ULF here.
Contact us: 1-800-728-5483 | office@ulf.org

Current Clinical Trials

Please find information on current clinical trials available.

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ClinicalTrials.gov Identifier: NCT04693598
Study Start Date: September 2021 (Recruiting)

Eligibility Criteria: For all the details, please review the content here on FBX-101, provided by clinicaltrials.gov.
To learn more about the Reskue trial click here.

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ClinicalTrials.gov Identifier: NCT04771416
Study Start Date: September 2021 (Recruiting)

Eligibility Criteria: For all the details, please review the content here on PBKR03, provided by clinicaltrials.gov.
To learn more about the GALax-C trial click here.

DISCLAIMER: Information provided on this site are listed in alphabetical order. The order of this document in no way expresses preference or priority for a particular organization.

3-Hydroxy-3-Methylglutaric Aciduria
3-Methylcrotonyl-CoA Carboxylase Deficiency
Argininosuccinic Aciduria
Beta-Ketothiolase Deficiency
Biotinidase Deficiency
Carnitine Uptake Defect
Citrullinemia, Type I
Classic Galactosemia
Classic Phenylketonuria
Congenital Adrenal Hyperplasia
Critical Congenital Heart Disease
Cystic Fibrosis
Glutaric Acidemia, Type I
Hearing loss
Hemoglobinopathies
Holocarboxylase Synthetase Deficiency
Homocystinuria
Isovaleric Acidemia
Long-Chain L-3 Hydroxyacyl-CoA Dehydrogenase Deficiency
Maple Syrup Urine Disease
Medium-Chain Acyl-CoA Dehydrogenase Deficiency
Methylmalonic Acidemia (Cobalamin Disorders)
Methylmalonic Acidemia (Methymalonyl-CoA Mutase Deficiency)
Primary Congenital Hypothyroidism
Propionic Acidemia
S, Beta-Thalassemia
S, C Disease
Severe Combined Immunodeficiency
Sickle Cell Anemia
Trifunctional Protein Deficiency
Tyrosinemia, Type I
Very Long-Chain Acyl-CoA Dehydrogenase Deficiency
Adrenoleukodystrophy