Nursing and Rare Disease
Nursing and Rare Disease: A Nurse Perspective on Rare Disease Management Guest Blogger: Carolyn Knight Nursing is a demanding calling no matter what area you work in. You’re expected to give the best care possible, all while working with patients, doctors, families, and your fellow nurses. It’s hard enough on the best of days, but [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET NATALIE!’ I am an adult in my 20′s with a rare disorder called Moebius Syndrome. I am the first in my generation to receive support from the many groups and foundations that exist today. Because of this support, I have been able to meet and share my story with others who share the same [...]
PATIENT STORIES OF HOPE AND INSPIRATION
‘MEET RUARI!’ My five year old son Ruari has Digeorge Syndrome or 22Q deletion. He was diagnosed when he was approximately 2 weeks old following emergency open heart surgery. The first year wasn’t great, but he gradually got over some of his issues and grew stronger. He is facing more open heart surgery in 2012. [...]
Blue Jean/Denim Inspired Bracelet, lovely way to raise rare awareness.
I love this blue jean/denim inspired bracelet, it reminds me of the ones from when I was a kid that we’d get at the beach in a natural color, tie on, keep on until it fell off from wear. I’ll be wearing this for rare disease awareness just as soon as it arrives! And then [...]
Global Genes Project, denim/blue jean bead bracelet.
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Blog for Rare, a success and follow-up!
Feedback so far from Blog for Rare (I can’t resist a kind word): Thanks for the wonderful opportunity – Love this! (Tanya Lachance) Looks great, thanks Catherine! (Yolaine Dupont) Thanks! This has been on my To Do list for 4 days. ‘Glad I got it DONE! (Hug Your Kids Today) (Elizabeth Joshi commented on your [...]
Blog for Rare! Bloggers from around the world come together for rare disease awareness and support for World Rare Disease Day 2010 (Feb. 28). #blog4rare
Welcome to the first official “Blog for Rare.” We’re bringing people from across the world together this week in celebration of World Rare Disease Day 2010 (February 28). This SNiPs post is a mix of web links to specific blog posts and to bloggers who have a connection to rare disease (a blog roll [...]