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 [...]
Zak’s Promise
“Opening Doors” For Prader-Willi Syndrome My wonderful son Zak was born with a rare genetic disease called Prader-Willi Syndrome (PWS). Although my wife and I may not have felt lucky at the time, we now know that we were blessed with good fortune when Zak was diagnosed as a newborn. Kids were mostly being diagnosed with [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET REMI!’ Meet Remi Savioz, a beautiful, curious, energetic 13-year-old girl with a spirit and smile that captivates everyone she encounters. When you first meet Remi, you will notice that she has speech difficulties and some physical challenges. You will also notice that she has a tremendous enthusiasm for life and making friends. What [...]
Illinois School Promotes Rare Disease Day
Two Hearts Rock and Rett Syndrome Having a rare disease makes us different. Making an impact in the minds of children by helping them understand what it means to be different through charitable acts is inspiring. When we are also able to influence our children about the importance of what it means to have [...]
Sempra Energy and Kids Helping Kids Volunteers Supporting Global Genes Project
Sempra Energy Foundation and Southern California rare disease advocates work to raise awareness and volunteer for the Global Genes Project, a RARE Project initiative. Family and friends gathered together to help make denim ribbons in support of the Global Genes Project’s efforts to support those children and families affected by rare disease. ”It has been [...]
NOMINATIONS OPEN – 2012 COLLEGE FOOTBALL RARE DISEASE CHAMPION AWARD!
The honor of the “Uplifting Athletes Rare Disease Champion” is presented annually to recognize a leader in the world of college football who has realized his or her potential to make a positive and lasting impact on the rare disease community. More than 7,000 different rare diseases have been identified affecting a total of nearly [...]
Incredible Teen Raising Money for A-T
Ataxia Telangiectasia Children’s Project, Inc. CATHRYN’S QUILT Cathryn Achilles (age 19) was diagnosed at age 8 with A-T. She loves to make quilts and although she struggles with some of the intricate tasks required, she designs, chooses the fabrics, and makes award winning quilts. She has just finished the most astonishingly, beautiful quilt and is [...]
Brothers And Sisters Need Support Too – ForeverSibs!
ForeverSibs provides support for siblings of kids affected by rare disease! ForeverSibs was founded in 2009 in an effort to acknowledge the siblings of children who are affected by a rare disease/disorder, or autism. The mission of ForeverSibs is to honor and recognize the unique role of brothers and sisters of children with medical and [...]
Children's Book Promoting The Differences Among Us – A Must Read!!
Arlene has plans, Big Plans. She’s going to be the youngest student government officer in Greenwood Elementary history. She’ll be the biggest thing to hit little Rhode Island since the invention of coffee milk. Sure, she wears purple leg braces and has a weird-sounding disease like Charcot-Marie-Tooth, but that won’t stop her. Onward she marches, [...]
TEXAS CHRISTIAN UNIV AND BUFFALO JEANS UNITE TO SUPPORT THE RARE DISEASE COMMUNITY!
Buffalo Jeans Brand Ambassador, Meghan Chamberlin dons Buffalo Jeans, showing support for Global Genes Project and those affected by rare disease Meghan Chamberlin, was chosen as one of Buffalo Jeans brand Ambassadors with the goal of promoting the Buffalo brand and their products while simultaneously supporting a great cause. Buffalo Jeans has become a corporate [...]