My father has begun to have constant heavy nosebleeds. We really don’t know what’s wrong, and are really worried, because he’s gone to the hospital and stayed there more than twice, and he’s gotten medicine from there already. I don’t know what’s wrong, and I’m worried that he has some type of rare disease or something. It has never happened to him before.
He’s using ice packs to stop the bleeding, but the blood which comes out is usually very watery.

We live in Cambodia, so it’s quite hot, but my father is indoors for most of the day (he works in a fully air conditioned office). Could it be stress? Please help me!

Every day, organizations like the National Organization for Rare Disorders (NORD) work with patients and families to connect them with the resources they need to manage rare diseases and disorders. These resources range from support group recommendations to contacts at companies creating therapies for rare and orphan diseases and disorders. In this video, we meet a family with two children affected by rare disease, and learn how, with the help of NORD and a drug therapy created by BioMarin, they refuse to let their disease hold them back.

Sabine was a participant in the 5th European Conference on Rare Diseases (ECRD) Krakow, Poland 2010. Sabine is a member of DEBRA which is an international support network for patients living with the rare disease Epidermolysis bullosa

www.myspace.com BBNB PROUDLY SUPPORTS PATRICIA & HER SONG DUSTIN IN RAISING AWARENESS FOR THESE RARE CONDITIONS. Patricia, who has been nearly bed-ridden for three years and cut off from the rest of the world by a series of major heath issues, is using MySpace to raise awareness about two rare diseases. Patricia has two rare and often misdiagnosed diseases that don’t allow her to work or drive. But she has managed to find a way to reach people in the outside world; the homebound woman is using the Internet to reach out and raise awareness about her diseases. Patricia has Ehlers Danlos Syndrome, a disease that breaks down collagen; she also suffers from Mast Cell Disease, which makes her have potentially fatal allergic reactions. As a result, Murray can’t be around Latex, perfumes or even light. Her doctor agrees such cases are extremely frustrating. Dr. Opal Alpan said, “Current medicine doesn’t have either answers or medications” for her situation. In fact, he says, there is no cure for her. But Patricia isn’t giving up; she is fighting back with music. Murray invited artists to become friends on her MySpace page, where she posted information about her diseases. Murray says she has singers from Australia, Asia and Pakistan, and that they know about Mast Cell Disease and Ehlers Danlos because of her. Patricia is so adamant about raising awareness for the diseases that she held a contest online and awarded the winner $20000 of her own money. Despite a life of chronic pain …

Text to 73774 (PEPSI). Followed by our voting code (102614) in the text message. Please vote daily, every vote counts. Voting ends September 30th. The Global Genes Fund is a platform dedicated to promoting rare disease research initiatives that are focused on developing therapies and treatments within these childrens lifetimes. This platform will be a clearinghouse for innovative, collaborative research that will impact the millions of children affected by rare diseases and disorders. Vote Today! www.vote4hope.org

Wills Hughes-Wilson, Senior Director, Health Policy Europe, Genzyme speaking on the occasion of Rare Disease Day 2010 at the European workshop hosted by EURORDIS entitled ‘Bridging Patients and Researchers’ to Build the Future Agenda for Rare Disease Research in Europe’

Okay so my ex bf cheated on me and we broke up. I recently
got very I’ll with a rare disease and the word went around. He heard and recently called me up and kept asking what happened and I didn’t tell him. So he called back saying he wanted
to know what was going on . He obviously doesn’t care about me cause he cheated on me ( I even told him this) and he said he wanted to know cause he heard and this
is really a eeryday thing (bs). So why does he want to know??
Ok look this disease is not contagious…. So no way possible he can get it. It will not effect him in any way and he knows this.

Cartoon produced by Bruno Bozzetto to awaken about rare diseases.

Ségolène Aymé is a medical geneticist and Director of Research at the INSERM (French Medical Research Institute). She is the executive manager of Orphanet. This service is currently funded by the French Ministry of Health, the INSERM and the European Commission (DG Public Health and DG Research). Since 2004, she has served as the leader of the Rare Diseases Task Force established by the European Commission, DG Public Health. She is also the Liaison Officer of the European Society of Human Genetics for International affairs, the Editor-in-Chief of the Orphanet Journal of Rare Diseases (www.ojrd.com) and the Chair of the WHO Topical Advisory Group for Rare Diseases. In this interview she speaks about her experience with patients and patient organisation in furthering research into rare diseases and the role in which patients can act as drivers of collaboration between researchers and act as catalysts for new research projects.

My dad passed away recently from multiple myeloma. “They” keep saying this is a very rare disease. I’m not sure I believe that. I have come to know a few people recently that have been diagnosed with this disease. My dad worked around a lot of chemicals. If you have experienced knowing someone who has this uncurable disease, do you think that working around chemicals is relevent to this disease?