World Rare Disease Day

Today is World Rare Disease Day.

I suffer from a condition that affects my eyes more specifically my retina and is called “Retinitis Pigmentosa” alsp known as RP.
Retinitis Pigmentosa like Stargardt Disease are known as rare diseases and in the eye world there are many rare eye diseases and they all deserve funds and awareness to help find treatments and eventually a cure .

On this important day its important to remember that not only organizations have to join forces and raise awareness together but we, the patients of rare eye diseases have to speak our minds and feel a sense of community and lead the way to help raise not just awareness but also funds for organizations like The Foundation Fighting Blindness who work every single day and night to help find a cure for our rare eye diseases.

I also want to encourage everyone who suffers from a rare eye disease tot alk about it, with your friends,f amily, in your local newspaper, radio, tv, etc…
If we don’t spread the word with everyone we know, the word will never get out of our small circle!
We need to be very open and honest about what is our disease, how it works and how can people help us.

As you know I run a Podcast to help raise awareness about eye diseases and everything low vision and blind related, well I want to offer my LVB Show to raise awareness about any eye disease you my readers may have or maybe someone you know does have.
You only need SKYPE and a microphone to do the interview.
PLEASE BE REMINDED THAT YOU ARE NOT ALONE, AND WE ALL ARE IN THE SAME BOAT!!!

Hope you think about today and take action to help make your rare eye disease known and better understood by the general public.

Alvaro.
Founder.
Low Vision Bureau
http://lowvisionbureau.podomatic.com

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