Patients and their caregivers are using health information software on their smartphones and tablets to manage their health and wellness, particularly among those with rare or less common conditions, those who are chronically ill, and those with service-connected conditions.

Use of these technologies has allowed patients and their caregivers to easily integrate disease management activities into their daily lives.

Recent actions to regulate mobile health apps and other health IT software have created confusion in the market about what technologies may be regulated next. We are concerned that this might inhibit development of these products or dramatically increase their price to consumers.

S.2007, the PROTECT Act, would clarify the regulation of medical device and health information technology, an important first step in updating how new health information systems and software are regulated to help ensure that products are safe and that patients and caregivers have access to these innovative technologies.

If you would like to add your organization to our PROTECT Act endorsement letter, please contact mike@hydrocephaluskids.org by Wednesday, April 9.

Please Download/Print the Letter in Support of S.2007

Rare Disease Report:

The Pediatric Hydrocephalus Foundation (PHF) was established by Kim and Michael Illions to raise awareness of this brain condition and provide support to the families living with hydrocephalus.

Combining both of those activities, the foundation will be in Washington this August to educate legislators about hydrocephalus and the foundation will provide assistance to all families wanting to attend this annual event.

PHF is also heavily involved in the community and has multiple fundraisers throughout the year, including ones at Detroit Tiger games.

Hydrocephalus — also referred to as water on the brain — is a lifelong condition in which persons have excessive accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain. Current treatment is usually to surgically insert a shunt that drains the excess CSF to other areas of the body (usually the abdominal region). During a person’s lifetime, multiple surgeries are usually necessary to replace or fix the shunts.

Join us on March 20th @ 7:30pm EST as Canadian Author Stefania Moffatt discusses her Hydrocephalus-themed book “Headstrong” and the 10 year old girl who is the inspiration for the book.

About Headstrong

Headstrong is about a fun-loving girl who likes to make people laugh. When Ellie was in her mommy’s tummy the doctors discovered a cyst on her brain, which turned out to be something called hydrocephalus. The book documents Ellie’s operations soon after birth to her life today as a “regular” kid.

Headstrong is a great book for kids of all ages as it demonstrates how you can overcome a challenge at any age and to accept and understand what makes people unique.

The book can also prepare kids for doctor and hospital visits.

Q & A session will follow.

The call is FREE. Please register to reserve your spot for this very special Conference Call.