Zellweger spectrum

Zellweger syndrome, neonatal adrenoleukodystrophy (NALD) and infantile refsum disease.

Discussions

Natural History Study of PBD-ZSD

jpemarshall
  • By jpemarshall · Posted September 5, 2012
  • 0 replies
  • Dr. Nancy Braverman, M.S., M.D. (Associate Professor Depts. of Human Genetics and Pediatrics McGill University-Montreal Children’s Hospital) is in the process of recruiting patients for a Natural History ...

My 8wk old son has zellweger spectrum.

kirstyneric
  • By kirstyneric · New reply June 7, 2012
  • 1 reply
  • My 8wk old son was diagnosed with zellweger spectrum at 5wks. We've been told a lot of things and also read up on it but i still don't feel like I've got all the answers i need. Please if your going through ...

Peroxisomal Biogeneis Disorders - ZS, NALD & IRD

jpemarshall
  • By jpemarshall · Posted February 17, 2012
  • 0 replies
  • Our 18 month old son, Ethan, has PBD-Zellweger Spectrum. I'm looking for other families that have been impacted by the Zellweger Spectrum of disorders. Thanks, Pamela ...

NALD--NEONATAL ADRENOLEUKODYSTROPHY

ADENSANGEL
  • By ADENSANGEL · New reply February 3, 2011
  • 2 replies
  • Our son Aden was recently diagnosed with this rare condition....Is there anyone on this website that has a child diagnosed with such a condition...we have done alot of reading and we are preparing for ...

Looking for other parents with IRD

savannabug
  • By savannabug · New reply December 2, 2010
  • 1 reply
  • I would love to hear from other parents just so that I no I'm not alone in this fight ...

Zellweger b aby

JRCK
  • By JRCK · New reply July 19, 2010
  • 1 reply
  • Hi I would like to know if there is any Zellweger, ALD or IRD perants in South Africa, we can't seem to find anybody colse to us that goes through the same things that we do, it can help to have someone ...

Sam Butalla - another struggle

Samsmom
  • By Samsmom · New reply May 1, 2009
  • 4 replies
  • I met some of you at the ULF Conference, and wanted to give you an update about our son, Sam. Sam was diagnosed with ALL - Acute Lymphoblastic Leukemia November 13th. We are home from the hospital after ...

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