Thursday, February 25, 2010

Rare Disease Day 2010 February 28



My friend E sent me this link, both our children had died of this very rare syndrome, Campomelic Dysplasia, This CD, I was told affect 1 in 5 million children. Some are fatal like E's daughter and my son. Some are not so bad, still it is a terrible thing.

http://groups.yahoo.com/group/campomelicfamilies/

I was going to do a post on Celiac disease when I knew someone who suffers so badly from it. I took this photo of gluten free spaghetti. Celiac sufferers are not allowed gluten.

http://www.medicinenet.com/celiac_disease/article.htm

http://www.rarediseaseday.org/article/download
http://www.rarediseaseday.org/article/about-rare-disease-day

On this day of February, think of those unfortunate people and their families.

Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and National Alliances of Patient Organisations at the national level
Who can take part?

Individuals, Patients,Patient Organisations,health professionals, researchers, drug developers, public health authorities - the more, the better!
When is Rare Disease Day?

Rare Disease Day is observed on the last day of February. Awareness raising events will take place in each participating country.

* To find out what is happening in your country, click here.
* To find out what EURORDIS is doing to bring attention to rare diseases on this day, click here.

Why is Rare Disease Day important?

Rare Disease Day is the perfect occasion to inform or remind people that rare diseases need to be paid special attention to, because:

Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Patients with very rare diseases and their families are particularly isolated and vulnerable. The life expectancy of rare disease patients is significantly reduced and many have disabilities that become a source of discrimination and reduce or destroy educational, professional or social opportunities.

The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope.

The lack of specific health policies and the scarcity of expertise translate into delayed appropriate diagnosis and difficulty of access to care. The national healthcare services for diagnosis, treatment and care of rare disease patients differ significantly in terms of their availability and quality. European citizens have unequal access to healthcare services and to orphan drugs.

Research on rare diseases is scarce

2 comments:

Bangchik said...

Rare disease has affected families in a lot of ways. Families with big hearts will come to term and get close together. Some families are ruined, both financially and emotionally.. The concern from many will sooth... ~bangchik

Anonymous said...

I didn’t know there is gluten free spaghetti I will have to look out for it!