A Teen mom has raised awareness on the show Teen Mom in the USA and please take a look by following the link below.
Today we delivered our yearly Christmas toys to our local children's ward, and we would like to thank everyone who kindly donated gifts and money to help support us.
We would like to say a very special thank you to Isabelle, Amelie and Tilly who made some lovely hampers for the
Please take a look at the link below for some great food and receipe ideas that are low fat and ideal with a metabolic condition.
Ultragenyx have asked us to share this useful link, which you will find very useful. We liase with Ultragenyx regarding many FAOD information and Please do click the link below, thank you.
Thank you to this man many lives have been saved through newborn screening, and we are hoping in time more rare diseases will be added to the newborn screening system so many more can be saved.
As you can see we are just like any other family, we both had great careers and life was pretty good. Me and Adam were newly married in July 2010, and by January 2011 we found out we were expecting baby number 2.... Jamie was going to be a big
Please take a look at the Link below, lots of information for families with Rare Disease.
I hope you all find this useful ☺
At NORD’s Rare Diseases & Orphan Products Breakthrough Summit, key stakeholders and industry leaders of the rare disease community will come together to identify breakthrough treatment options and therapies for patients with rare diseases. Nicole Hebbert, Vice President of UBC’s Commercial Services Operations, will be part of the panel discussion
Fetal Fatty Acid Oxidation Disorders, Their Effect on Maternal Health and Neonatal Outcome: Impact of Expanded Newborn Screening on Their Diagnosis and Management
Prem S Shekhawat1, Dietrich Matern2 and Arnold W Strauss3
1Department of Pediatrics, Medical College of Georgia, Augusta, Georgia, 30912
2Departments of Laboratory Medicine and Pathology, and Pediatric and Adolescent Medicine, Mayo Clinic College