What is newborn screening? Newborn screening is one of the most successful public health programs ever enacted, saving thousands of lives over the past 50 years. Newborn screening allows physicians to catch rare genetic conditions at birth and start treatment almost immediately following birth; it enables efficient diagnosis and access to treatments that can save...
Tag: Advocacy
PWSA | USA Voices Support for Ally’s Act
Ally Tumblin, a fourth grader in Colorado, was born without a right ear and ear canal, a condition known as Microtia Atresia. The only way she can hear is a with a specialized bone-anchored hearing device that costs between $5,000-30,000… and none of it is covered by insurance. Ally, motivated to change the law and...
Why You Should Hire Someone with Prader-Willi Syndrome
Persons with Prader-Willi syndrome (PWS) will work hard to earn your praise for a job well done. Given the correct environmental structure and supports, someone with PWS can be one of your hardest working and valued employees. When it comes to tasks like sorting, shredding, adhering stamps onto cards, repetitive responsibilities of this nature, and...
PWSA (USA) ADVOCACY ALERT NETWORK SEEKS MEMBERS
The PWSA (USA) Advocacy Committee is seeking interested persons to participate in the newly created Advocacy Alert Network. Persons who join the Network will be notified by Committee members of pending legislative issues affecting PWS and be provided with a model email or letter that can be used to contact legislators regarding the issue. In...
The Confusing World of Growth Hormone Insurance Coverage and Denials
The Confusing World of Growth Hormone Insurance Coverage and Denials – Kathy Clark, PNP, PWSA (USA) Coordinator of Medical Affairs It may feel like insurance companies are the enemy when they deny a medication that we feel is so important to our children. There are some complex explanations that I will list here that...