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RARE Charities Unite Worldwide to Fund Research for Rare DiseaseCharities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused...
ACTION ALERT – World RARE Disease Day at National Institute of HealthWear That You Care - February 2012 supporting rare disease families! Rare Disease...
In A Parents Words – Why RARE Disease Needs ULTRA!Roy and Reed Zeighami, couldn’t have articulated it better – why the...
HAPPY NEW YEAR! BEST WISHES THIS 2012From all of us at RARE Project ~ Wishing you a new year filled with HOPE, PROMISE,...
Action Alert: Unlocking Lifesaving Treatments Act – ULTRA Act of 2012In December 2011, U.S. Representatives Cliff Stearns (R-FL) and Ed Towns (D-NY),...
Read More Posts From This CategoryFamily Life
GUEST BLOG: A special collaboration among the RARE Project, Grand Rounds, and The Afternoon Nap SocietyGuest Blog by Sarah E. Kucharski of the Afternoon Nap Society A special collaboration...
CNN Health – Mom claims in viral blog that disabled child denied transplant(CNN) — Can a patient be rejected for a kidney transplant based on a developmental...
Patient Stories of Hope and InspirationPatient Stories of Hope and Inspiration – To be shared with the world every day...
Submit Your Story to the Rare Children’s Storybook Project by January 13Has your family submitted to the “Rare Children’s Storybook Project” yet? Your...
HAPPY NEW YEAR! BEST WISHES THIS 2012From all of us at RARE Project ~ Wishing you a new year filled with HOPE, PROMISE,...
Read More Posts From This CategoryAdvocacy/Policy
RARE Charities Unite Worldwide to Fund Research for Rare DiseaseCharities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point, CA) Rare Disease affects 350 million people worldwide, consisting of 7,000+ identified diseases and disorders. Currently less than 5% of all rare diseases have any type of therapy or treatment, and much of the... [Read more of this review]
Sempra Energy Foundation Encouraging Volunteerism and support of rare disease!Kids Helping Kids Volunteers - Kyle and Jackson Watkins, with Lynn Watkins and Lisa Hubbard of Sempra Energy Supporting Global Genes Project 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... [Read more of this review]
Patient Stories of Hope and InspirationPatient Stories of Hope and Inspiration – To be shared with the world every day in the month of February 2012! Thank you to all those who have submitted stories of hope and inspiration! We’ve received many heartfelt stories from parents and patients of those affected with Moebius Syndrome, CPS (Carbamoyl Phosphate Synthetase), Dystonia, undiagnosed,... [Read more of this review]
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