RARE DISEASE – The Fight to be on top
How Rare Disease Affects Me I get asked all the time why I am so passionate about RARE Disease. I get asked even more why I have volunteered for the last 8 years for rare disease, without pay. Individuals who have not encountered rare disease, or really thought about it for that matter, truly become [...]
February 29 – 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 National Embroidery month (my favorite), Wild Bird Feeding, Cherry and [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET JUNE!’ 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 disease. Some day it will probably kill me, [...]
RARE Disease Lobby Day – February 28 Washington, DC
RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease Week! Join us and make sure Congress hears your voice! Lobby Training Breakfast 7:30a.m. – 9:30a.m. Darlington House 1610 20th ST NW Washington [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET ANDY!’ Hi, my name is Andy. I was born in Watford in the UK back in 1975. In 1994, I moved to Australia to attend University. This is also the same year my medical problems started with my first kidney stone a week before my nineteenth birthday. Since then, I have had [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET VANESSA AND JACOB!’ Vanessa and Jacob both suffer from a very rare genetic disease. They are the first known cases of duplication chromosome 14q32.33. They both have low muscle tone, vision problems, weakened immune systems, asthma, OCD, ADHD, and heart defects. Vanessa has non alcoholic steatohepatitis, glaucoma, her right side is 2 inches shorter [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET NICO AND HIS FAMILY!’ 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; cardiology; growth hormone program [...]
RARE Disease Lobby Day
WHEN: February 28, 2012 WHERE: Washington, DC WHO: RDLA RDLA (Rare Disease Legislative Advocates) is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease [...]
Submit Your Story to the Rare Children's Storybook Project by January 13
Has your family submitted to the “Rare Children’s Storybook Project” yet? Your story could win up to $750 to help with medical costs. The deadline has been extended to January 13. MarbleRoad who is managing this promotion was awarded an “Empowerment Grant” from Genzyme to hold an online contest within the rare disease community for [...]
Are You a Blogger? Join our Blog Hop for RARE disease on January 30th!
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 Disease Day. What is a blog hop? A blog hop is when bloggers write about a common theme/topic on a specific date. The hosting blog (which will be [...]