Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at dawn.laney@emory.edu or 404-778-8518.
Medical Papers
Clinical Presentation & Guidelines
X-linked adrenoleukodystrophy (X-ALD): clinical presentation and guidelines for diagnosis, follow-up and management. Marc Engelen13, Stephan Kemp, Marianne de Visser1, Björn M van Geel, Ronald JA Wanders, Patrick Aubourg and Bwee Tien Poll-The.
Lorenzo’s Oil
Current and Future Pharmacological Treatment Strategies in X-ALD, International Society of Neuropathology – please read page 2 for information about Lorenzo’s Oil
Bone Marrow Transplant
Dr Colin Steward, Consultant in BMT, Genetic and Metabolic diseases at Bristol Royal Hospital for Children – information about using stem cell transplantation to treat patients with cerebral ALD
Addison’s disease
Dr Colin Steward, Dr Marie-France Kong and Professor Stafford Lightman – a statement about the link between Adrenoleukodystrophy and idiopathic Addison’s disease