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 […]

February 29, 2012 – A Celebration of Unity


The Month of February During the month of February,  much of the American population will be celebrating historical events, special interest groups and campaigns.  Some of these include Black History,  American History, Children’s Dental Health, and American Heart Month.  Internationally recognized events in February include […]

Relapsing Polychondritis – My Chances of Winning The Lottery Are Better


I am a 43 year old woman with Relapsing Polychondritis. 1 in 3.5 Million people are diagnosed with this disease. My favorite saying is, “I couldn’t just win the lottery??”  I was diagnosed by my allergist who recognized my swollen ears, a hallmark of this […]

Lady Gaga – ‘Born This Way’ Foundation (BTWF) Launches To Promote Acceptance


“Whether life’s disabilities left you outcast, bullied or teased.  Rejoice and love yourself today ’cause baby, you were born this way.” – Lady Gaga How many of us have experienced a time when either ourselves or our children have been mocked or teased because of […]

Niko Syndrome – Our Search For A Diagnosis For A Rare Disease


Our eight-year-old Nico could likely give a pretty extensive tour of the Hospital for Sick Children (SickKids), his home away from home.  He could show off all the places he spends his time at:  the neurosurgery clinic; ophthalmology clinic; ears, nose and throat clinic; dermatology; […]

Rare Stories of Hope and Inspiration – Submit Yours Today


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, Glut1 DS, Krabbe’s Disease, Charcot Marie Tooth Disorder and many more. […]

Improving Drugs and Biologics for Children – Washington DC Briefing


The laws named the Best Pharmaceuticals for Children Act and Pediatric Research Equity Act, or BPCA/PREA, have resulted in over 400 drug labels. Be sure to check out the speakers at this event sponsored by BIO.