Tag: RARE Blog

A total of 62 posts are filed under RARE Blog
Shakes and Stones — Life with Cystinuria and CIDP
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… 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
Marshall and Me – My Hero Brother Is Fighting Krabbe Leukodystrophy
At 17 months of age, he was diagnosed with a rare Leukodystrophy called Krabbe’s Disease. A genetic disorder affecting the nervous system… Continue Reading
Blog Hop for Rare Disease Day – Please Read, Share and Raise Awareness!
There are less than 30 days to World Rare Disease Day on February 29. We kick off our campaign this year as host of a Rare Disease Blog Hop.… Continue Reading
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome
Charities Unite Worldwide to Fund Research into Reversibility of Brain Damage Caused By Sanfilippo Syndrome (RARE Project – Dana Point,… Continue Reading
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 Project,… Continue Reading
World RARE Disease Day at National Institutes of Health
On February 29, 2012, the National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration… Continue Reading
be-a-guest-blogger

Follow us on Twitter

Upcoming Events

Sep 14

RARE Patient Advocacy Summit

September 14 @ 8:00 am - 5:30 pm
Sep 14

RARE Partnering 2017

September 14 @ 8:00 am - 5:00 pm
Sep 15

RARE Patient Advocacy Summit

September 15 @ 8:00 am - 4:00 pm
Sep 15

RARE Champion of Hope Awards

September 15 @ 4:30 pm - 9:00 pm
Sep 16

Corporate Alliance

September 16 @ 9:00 am - 12:00 pm
Sep 16

RARE Day of Beauty

September 16 @ 12:30 pm - 4:00 pm
Sep 16

Tribute to Champions of Hope

September 16 @ 5:30 pm - 10:30 pm