National Nurses Week – Thank those that work to help our kids!

Every year from May 6th – 12th the American Nurses Association celebrates National Nurses Week, and the 2011 theme is “Nurses Trusted to Care.” My favorite quote honoring nurses is, “You heal sometimes. You relieve often. You comfort always.” Camus. A special thanks goes out […]

MOVING GENE THERAPY INTO HIGH GEAR – Innovations from Children's Hospital Boston

Gene therapy, still experimental but beginning to enter the clinic, attempts to utilize advanced molecular methods to treat and even reverse genetic diseases. The field started in earnest about 25 years ago and has had many setbacks along the way to its recent earliest successes. […]

Donate or Sign up to recieve your 7,000 Bracelets for Hope™


7,000 Bracelets for Hope Continues throughout 2012 The 7,000 Bracelets of Hope campaign has already inspired hundreds of bracelet designers from all around the globe to join in helping champion the rare disease community by supporting this important cause! Bracelet donations are being accepted and […]

San Francisco Giants to host Rare Disease Fundraiser for MPS IV – with YouTube sensation Keenan Cahill!


No Question, Brian Wilson and Cody Ross are truly dynamite!!! Check out this article and video and pass it on!

BIO National Convention – Call out to Patient Groups – END OF DAY TODAY!!

The BIO International Convention has a tremendous tradition of connecting the Life Sciences Community of Stakeholders.  Each year, BIO brings more opportunities to the table for patient advocacy groups to attend this event, garner exposure for their organization, and enjoy the benefits of the week […]

DNA Day – “Wear That You Care”


About National DNA Day National DNA Day commemorates the successful completion of the Human Genome Project in 2003 and the discovery of DNA’s double helix by James Watson and Francis Crick in 1953. This annual celebration offers students, teachers and the public many exciting opportunities […]

RARE Artist Art Contest Winners Announced


This year’s contest produced another amazing collection of beautiful artistic expression. We received many incredible and moving works of art in a variety of mediums, including paintings, drawings, quilts, photography, sculptures and glass work. Entries to this year’s contest grew by nearly 50% from our […]