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Study on Families with Young Children with Addison’s Disease

7th August 2018

Genetic Alliance and the Living with CAH support group have recently published a study on the difficulties faced by families whose children have Addison’s Disease and other rare endocrine conditions. The research explores the difficulties getting diagnosis, treatment and living with a rare condition which does on occasion need emergency treatment.

Click here to read the results of the study

 

Addison’s Disease (or adrenal insufficiency) can be an indicator of Adrenoleukodystrophy (ALD), and ALD Life has been working on increasing awareness of this link amongst endocrinologists. You can read more about this project here.

 

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20 hours ago

ALD Life

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. ...

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