Rare Disease Day, February 28, 2011


Posted 2.1.11 | Mallory West

The European Rare Disease Organization (EURORDIS) established the first Rare Disease Day in 2008. Then, in 2009, EURORDIS asked the US-based National Organization for Rare Disease (NORD) to join the initiative and sponsor Rare Disease Day in the United States.

February 28, 2011 will mark the fourth Annual Rare Disease Day and there will be over 46 different countries participating! The goal is to raise awareness about rare diseases and the many challenges encountered by those affected.

This day is special for us at Nutricia because so many of our families are touched by rare disease. You are probably aware that we make medical foods for infants and children with food allergies and gastrointestinal conditions, but you might be surprised to know that we also make products for people with metabolic disorders, such as Phenylketonuria (PKU) and neurological conditions, like intractable epilepsy.

Our GI/Allergy Division (Neocate) makes medical foods for infants and children with food allergies, gastrointestinal disorders and various types of allergic diseases. There are several rare diseases that fall under this category, such as Food Protein-Induced Enterocolitis Syndrome (FPIES), Eosinophilic Esophagitis (EoE) and other types of eosinophilic conditions.

Our Metabolic Division makes medical foods for infants, children and adults with inborn errors of metabolism. Inborn errors of metabolism, also known as metabolic disorders, are rare genetic disorders in which the body cannot properly turn food into energy. People with these conditions must remain on a special, protein-restricted diet for their entire lives.

Lastly, our Neurology Division makes a formula called KetoCal, which is used by patients on a Ketogenic Diet (KD). The KD is a strict, high fat and very low carbohydrate diet that is used to manage intractable epilepsy, a form of epilepsy that cannot be controlled with anti-epileptic medications. Certain rare seizure disorders, such as Dravet Syndrome, are difficult to control with medication but often respond well to the KD. In addition to patients with epilepsy, the KD is also used by patients with rare metabolic disorders in which the body is unable to process carbohydrates for energy, such as Glut1 Deficiency and Pyruvate Dehydrogenase Deficiency.

In honor of Rare Disease Day, Nutricia would like to recognize our families that are coping with rare diseases, which may include:

This year, families are encouraged to share their story via video! For more information or to get involved on Rare Disease Day, visit http://rarediseaseday.us/.

Rare Disease Day is extra special to me because my younger sister, Caroline, has a rare condition called Alternating Hemiplegia of Childhood. Is your child affected by a rare condition? Tell us your story!

-Mallory

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About Us

Food Allergy Living is a resource for parents of children with food allergies, brought to you by Nutricia, the makers of Neocate. For more in-depth information about our purpose & authors, see our About Food Allergy Living page.