What Are The Odds Of Having A Rare Disease? PDF Print E-mail
Tuesday, 20 March 2012 23:31
There are over 7,000 known rare disorders or diseases, a statistic which is continually growing as medical science advances. The European Union's definition of a rare disorder or disease is a condition which affects 5 or less people in every 10,000.

Scleroderma is a rare, autoimmune, connective tissue disease characterized by the overproduction of collagen, which results in the thickening and hardening of the underlying connective tissues which support the skin, blood vessels, muscles, and internal organs such as the heart, lungs, and kidneys. It affects approximately 2 people in every 10,000.

What are the odds of having a rare disease though? Here are some noteworthy statistics:
  • 10 percent of Americans suffer from a rare disease (approximately 30 million people)
  • Europe also has approximately 30 million with a rare disease
  • More than 350 million people worldwide have a rare disease
  • If all of the people with a rare disease lived in one country, it would be the world's third-most populous country
  • 80 percent of rare diseases are genetic in origin
  • 75 percent of rare diseases affect children
  • 30 percent of children with rare disease will not live to see their fifth birthday
  • Rare diseases are responsible for 35 percent of deaths in the first year of life
  • There are more than 7,000 different types of rare disease
  • 80 percent of all rare-disease patients are affected by just 350 rare diseases
  • 95 percent of rare diseases have no FDA approved drug treatments, according to data published by the Kakkis EveryLife Foundation
  • More than 95 percent of rare diseases have no therapy or drug
  • 50 percent of rare diseases do not have a disease-specific support foundation
Source: www.rareproject.org

 
More articles :

» A Call For Better Monitoring and Treatment Of Scleroderma Patients

The New Zealand Scleroderma Group is calling for the introduction of a monitoring and treatment programme for New Zealanders with scleroderma to mark World Scleroderma Day on June 29.Scleroderma is an autoimmune connective tissue disease that can...

» Vitamin D More Important Now, Than Before

Vitamin D is something of a wonder drug, but bad things can happen if your body isn’t getting enough. Those who get adequate levels of vitamin D are better able to ward off everything from cancer to heart disease to autoimmune disease.But here’s...

» Role of N-terminal Brain Natriuretic Peptide in Scleroderma-associated Pulmonary Arterial Hypertension

Mark H. Williams, Clive E. Handler, Raza Akram, Colette J. Smith, Clare Das, Joanna Smee, Devaki Nair, Christopher P. Denton, Carol M. Black and John G. CoghlanFirst published online: April 27, 2006Source:

» Silicone and Scleroderma Revisited

Silicone, a synthetic polymer considered to be a biologically inert substance, is used in a multitude of medical products, the most publicly recognized of which are breast implants. Silicone breast implants have been in use since the early 1960s for...

» Rituximab Shows Promise in Scleroderma

Rituximab (Rituxan) improved lung function in patients with , a small proof-of-principle study found.At one year, patients randomized to receive rituximab had a median 10.25% increase in forced vital capacity (FVC) compared with baseline, while...

» Our First Year Anniversary

Celebrating an important anniversary is always a blessing. The Scleroderma Care Foundation was officially incorporated on 15th October 2008. Its mission to provide support and education for persons afflicted with within Trinidad and Tobago became a...