Soft Bones Foundation Celebrates Fourth Annual Hypophosphatasia (HPP) Awareness Week
(firmenpresse) - BOONTON, NJ -- (Marketwired) -- 10/30/14 -- Soft Bones, Inc., an organization dedicated to providing information, education and support to those affected by hypophosphatasia (HPP), is pleased to celebrate the fourth annual HPP Awareness Week and the official HPP Awareness Day, October 30, on the day before Halloween.
To celebrate, Soft Bones will launch its new hypophosphatasia blog, "BoneZone," by the end of this week to give HPP patients a place to tell their stories. Patients are also participating in a social media campaign that involves sharing pictures of themselves wearing their HPP t-shirts. Banners and email tags have also been created and are available for sharing to help raise awareness.
Also during the awareness week, HPP leaders from around the world are meeting in Brussels to discuss how to continue to work collaboratively to educate stakeholders about this ultra-rare disease.
"While we celebrate our HPP awareness day around Halloween, hypophosphatasia doesn't have to be scary," says founder Deborah Nettune Sittig. "The more people know and understand the HPP, the more empowered patients and caregivers feel to make smart choices on how to best manage the disease."
HPP Awareness Day became an official recognized day in 2012 after a resolution from the State of New Jersey. More information about the day, hypophosphatasia and Soft Bones can be found at .
Hypophosphatasia is an inherited, ultra-rare metabolic (chemical) bone disease that occurs in approximately one per 100,000 live births. Depending on the severity of the skeletal disease, symptoms can include deformity of the limbs and chest, pneumonia and recurrent fractures. While there is currently no cure for hypophosphatasia, treatment is directed towards preventing or correcting the symptoms or complications.
Soft Bones was founded in 2008 to provide information and to establish a forum to educate, empower and connect patients living with hypophosphatasia, their families and caregivers. The Foundation also promotes research of rare bone disease through awareness and fund-raising efforts. Under the leadership of Deborah Nettune Sittig, Soft Bones has raised awareness around the world, including advocating for the disease to receive the policy recognition and research funding it deserves and providing medical attention to children affected by hypophosphatasia around the globe.
Jane Castello
973-453-3093
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Datum: 30.10.2014 - 13:02 Uhr
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