Feb. 29, 2016 is Rare Disease Day and throughout March 2016, Global Genes will hold a month of awareness for World Rare Diseases. The theme for 2016 is “Patient Voice.”
The illnesses are rare and the names likewise. A minuscule sampling of rare diseases are: Abetalipoproteinemia or Blepharophimosis ptosis and epicanthus inversus syndrome type 2 and Brachymetapody anodontia hypotrichosis albinoidism and Erythrokeratodermia variabilis ichthyosis.
They even have diseases that begin with numbers instead of letters such as 3-alpha hydroxyacyl-CoA dehydrogenase deficiency and 4-hydroxyphenylacetic aciduria.
At least there are some pronounceable rare diseases such as Autoimmune Inner Ear Disease or Hairy Tongue disease.
This annual observance aims to raise rare and genetic diseases awareness and to improve access to treatments and medical representation for individuals with rare diseases and their families.
There are more than 7,000 different rare diseases and disorders affecting 300 million people worldwide. More are being discovered every day. By definition a disease is rare if it affects less than 1 in 2000 people.
30% of children with rare diseases do not live past five years of age.
80% of rare diseases are genetic in origin.
50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
Global Genes provides free resources called Rare Toolkits for those living with or advocating for someone with a rare disease.
The information is interactive, continuously evolving and available in print or PDF format. Some topics include: How to Discuss Genetic Disease With Your Loved Ones; Access to Unapproved Medicine (Canada); Using Storytelling to Raise Awareness for Your Rare Disease.
Three important readings for everyone are in the From Molecules to Medicine series: How Are New Drugs and Therapies Developed, Clinical Research and How Patients Can Share Their Voices Throughout the Drug Development Process.
Global Genes has many podcasts, webinars, documentaries and films on their site that are informative and inspirational.
For more information contact Global Genes World Headquarters at 28 Argonaut, Suite 150, Aliso Viejo, California 92656 or call (+1) 949-248-RARE (7273) or go online to globalgenes.org
