Interstitial lung disease-nephrotic syndrome-epidermolysis bullosa syndrome

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Synonyms: ILNEB syndrome | JEB with interstitial lung disease and nephrotic syndrome | Junctional epidermolysis bullosa with interstitial lung disease and nephrotic syndrome

A life-threatening multiorgan disorder which develops in the first months of life presenting with respiratory distress and proteinuria in the nephrotic range and leading to severe interstitial lung disease and renal failure. Some patients additionally display cutaneous alterations ranging from blistering and skin erosions to an epidermolysis bullosa-like phenotype with toe nail dystrophy and sparse hair.

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version July 2024

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Advocacy Organizations

Breathe Support Network

MISSION STATEMENT The Breathe Support Networks mission is to provide support and education for pulmonary fibrosis patients and their families, helping them to better #LIVEwithPF. This includes, but is not limited to: - education about pulmonary fibrosis - guiding patients and families on how to talk to their healthcare team - providing tips to live a healthier more productive life - providing information about other pulmonary fibrosis resources

Help Hope Live

Help Hope Live supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. These efforts play a critical role in helping clients access the care and equipment they need to heal, live, and thrive. Unlock a powerful and safe way to raise funds for medical needs with Help Hope Live. They provide one-on-one fundraising guidance, a customizable Campaign Page, bill pay support, and additional benefits based on their 501(c)(3) nonprofit status.

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Clinical Trials

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