Tag: public awareness

A total of 23 posts are filed under public awareness
Sibilings Have First Known Cases of Duplication Chromosome 14q32.33
Vanessa and Jacob both suffer from a very rare genetic disease. They are the first known cases of duplication chromosome 14q32.33. They both… Continue Reading
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.… Continue Reading
RARE Disease Lobby Day
WHEN:          February 28, 2012 WHERE:        Washington, DC WHO:           RDLA RDLA (Rare Disease Legislative Advocates)… Continue Reading
Are You a Blogger? Join our Blog Hop for RARE disease!
We are calling all bloggers to join us in a RARE disease focused blog hop on Monday, January 30th which will be 30 days before World RARE… Continue Reading
Occidental College Soccer Team promotes the Global Genes Project Wear That You Care campaign
The Occidental College women’s soccer team located in Los Angeles, CA, came together to support the Global Genes Project and the blue jean… Continue Reading
Learning to balance privacy and the call of advocacy
As with anything, it turns out there is learning curve to using my personal blog as a platform for advocacy. It is a challenge that I am… Continue Reading
R.A.R.E. Project's, Jonathan Jacoby to present at FDA Hearing on Rare Disease
On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public hearing… Continue Reading