February 28, 2017: Rare Disease Day

February 28, 2017

As you well know, Prader-Willi Syndrome is considered a rare disease. In the USA, any disease or syndrome that affects less than 200,000 people is considered rare; 1 in 10 people are affected by a rare disease and 2/3 of those impacted are children. Watch the video HERE created by www.rarediseaseday.us, about what qualifies as a rare disease. 

Other interesting facts about rare diseases include:

*There are more than 7,000 known rare diseases are impacting 30 Million Americans, which equals 1 in 10 people affected.

*More than 15 Million are children.

*80% are genetic conditions.

*95% of rare diseases are without an FDA approved treatment or therapy.

*That 5 % with FDA treatment still struggle with accessing it due to high costs and variability.

*Patients with rare diseases are frequently misdiagnosed or undiagnosed.

*Many rare diseases result in premature death of infants & young children or are fatal in early adulthood.

*Families & private foundations provide about 3% of ALL medical research funding in the U.S.

Approximately 60% of the residents at Latham Centers are diagnosed with Prader-Willi Syndrome. Parents and Guardians of the residents at Latham Centers are familiar with the struggle involved with a rare disease diagnosis, and together, we are working towards better treatments and accommodations for residents diagnosed with the complex PWS Diagnosis.