Rare diseases: corneal neuralgia, ocular neuropathic pain, Meesmanns dystrophy, corneal dystrophy, Sjogren’s syndrome Something changed in my 30’s, it started slowly. I had worked with… Continue reading Fighting for my eyes, fighting to be seen
Results for "light up for rare"
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In 2017, I lost my 13 year old brother very suddenly due to a rare, previously undiagnosed brain condition called AVM. We had never heard… Continue reading My brother in heaven
Hi, Â Â Â I am a 37-year-old man from northern Ontario Canada. Â I have been diagnosed with ACTH dependent Cushing Disease secondary to a… Continue reading Health Care in Need
My name is Shambhavi from India and I am living with Alagille syndrome. I love to read, drink tea, take walks, travel, write, wiggle about… Continue reading I am Shambhavi
A test of inner strength awaits as the pressure builds upon the nerves and various problems build-up which may exhaust my energy with the approach… Continue reading Warrior Princess
A test of inner strength awaits as the pressure builds upon the nerves and various problems build-up which may exhaust my energy with the approach… Continue reading Warrior Princess
My Story Before October 30, 2014 I lead an extremely busy life. I sit here six and a bit years on, with three rare conditions… Continue reading How your life can change in a day!
Hi! My name is Robert, I am 35 years old and I love life! And how do I see life? First of all, I can say that “Life”… Continue reading Enjoying life, even if I have SMA
– External campaign to Raise awareness around rare diseases among the general audience – HQ Light Up – 2 webinars for Internal Awareness