Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
Date of Event: May 11th, 2013 Organization: The Mauli Ola Foundation Location: Hotel Paradox, Santa Cruz. Join us at the Hotel Paradox on May 11th as the Mauli Ola Foundation brings in big name surfers for an autograph session benefiting Cystic Fibrosis. Cystic Fibrosis is a [...]
The Balancing Act will be featuring Hill-Rom’s latest solution for Cystic Fibrosis. The MetaNeb® System by Hill-Rom – The MetaNeb® System is indicated for the mobilization of secretions, lung expansion therapy and the treatment and prevention of pulmonary atelectasis. It also has the ability to provide supplemental [...]
The Food and Drug Administration looks set for a great 2012. With a few days left to go, it has approved 40 new drugs and vaccines, one of the most impressive totals ever, according to data from Pharmaceutical Approvals Monthly and FDA press releases. In [...]
Great news for the cystic fibrosis community. Vertex Pharmaceuticals announced that European regulators have approved its new rare disease drug Kalydeco to treat cystic fibrosis (CF), a rare and often fatal inherited disease, which causes mucus to thicken and block the passage of air to [...]
“It’s not so bad to find out that you are a carrier…[but] finding out that you are a carrier of SMA [spinal muscular atrophy] from your child dying is the wrong way to do it.” -Deborah Heine, executive director of the Claire Altman Heine Foundation [...]
Having a seriously ill child is always difficult and painful. It’s even more so when a child’s illness is one of the 7,000 rare diseases for which cures and treatments are hard to find. Rare diseases affect more than 15 million children in the United [...]
The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As ‘Ambassadors of Hope’ To Win $250K Pepsi Grant For The [...]
