Announcing RARE Project’s Newest Program
RARE Meetups and Local Leaders Program We are very excited to announce the roll-out of RARE’s new community support program “RARE Meetups and Local Leaders.” The very first RARE Meetup will be held in the South Orange County area (Southern California) on Thursday, May 31, 2012 from 10:00 a.m. to approximately 12:00 noon. All [...]
Hope and Inspiration: Your Personal Stories
XX Hope. It’s in our Genes.™ XX Do you have Hope in your Genes? XX We are so thrilled with the number of patient stories we have received for Rare Disease Day and have decided to implement this important key awareness initiative by promoting stories throughout the year. Your individual patient stories have made quite [...]
MarbleRoad: A Storybook Success
Helping To Raise Awareness MarbleRoad, a non-profit based in DC wanted to make a creative impact to raising awareness to families in need. Their mission: ….” to connect people who have complex illnesses with the resources they need to help them improve their lives.” And with the help of RAREProject and others, MarbleRoad accomplished their [...]
NIH Supports Global Genes Project and Jeans/Genes Awareness Efforts
Over the past two years, the Global Genes Project efforts have been highly visible at the NIH for the annual World Rare Disease Day events. In 2012, we presented Dr. Francis Collins and Dr. Steve Groft with a Rare Pictures of Hope™ photo book made by thousands of rare disease advocates. In 2011, Nicole Boice, [...]
Christopher – Growing up with Hunter Syndrome
Raising Awareness for MPS II When he was 6 years old, Christopher Dutcher was diagnosed with Mucopolysaccharidosis II (MPS II), commonly referred to as Hunter Syndrome . Remarkably, at the age of 28, Christopher has a dual MBA in Marketing. This is remarkable because many of those affected with Hunter Syndrome can have a significant [...]
Meet Madison – A Family’s Fight Against Carbamoyl Phosphate Synthetase Disease
Madison Sonja Van Leeuwe was born on Christmas Day 2009 after a normal labor and delivery. After an uneventful hospital stay, Madison was discharged home two days later. Only a matter of hours after she was home, Madison began having difficulties breathing and started turning blue. She was rushed through a Minnesota blizzard to the [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET BRAYDEN!’ “Fighting ABCA3 Surfactant Deficiency Since Day One” My name is Amanda Havens and my son Brayden Matheu Pearson was born with a rare genetic disease. He was born with ABCA3 surfactant deficiency and most do not know about this disease. He does not produce the surfactant in his lungs to transport the oxygen [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET THE SPOONER FAMILY!’ Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising three beautiful children. Despite achieving success in operating their loan company, the Spooners have faced greater challenges and discovered even greater meaning in their lives through the caring [...]
RARE Disease Lobby Day
WHEN: February 28, 2012 WHERE: Washington, DC WHO: RDLA RDLA (Rare Disease Legislative Advocates) is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease [...]
Kylie McPeak – Living Life with an Undiagnosed Rare Disease
Our daughter Kylie was perfectly healthy until three days before her 4th birthday – April 2008. She had a sudden seizure. From that moment on our lives changed drastically. After her first seizure, she developed a strange twitch by her mouth which then turned into a “tremor.” Over a matter of months, the tremor spread from her [...]