Wednesday, February 29, 2012

Rare Disease Day

Today is worldwide Rare Disease Day.  It doesn't get much more rare than our sweet baby Matthew.  Matthew's uniqueness (4q25-34.2 chromosome duplication) is so very rare-- he's 1 of 2 in the world! (that we know of)  It is so rare, I doubt it even registered as one of the over 7,000 rare diseases that have been identified.  But even if he is only 1 of 2 in the world, he is not alone.

Some of the facts about rare diseases--

Rare Diseases affect over 250 million people worldwide, 30 million people in the US alone, with 75% affecting children. There are over 7,000 rare diseases that have been identified, all with very unique needs, but many with little to no support. We need to be viewed as one: one community of millions, impacted by disease. Rare disease is not so rare, and the community is much more likely to garner the support, attention, and resources it needs if it is viewed as one.

The Global Genes Project™ exists to unify, support, build awareness and raise much needed funds for those affected by rare disease. The Global Genes Project™ campaign broadly promotes the needs of the rare disease community as a whole, engaging the general public, garnering corporate support under the unifying symbol of hope: the blue denim ribbon.  (source: the Angelman Syndrome Foundation) 

We support the Global Genes Project and all of those, like Matthew, who are affected by rare diseases.

No comments:

Post a Comment