Recent Facebook Posts

Great news!! We have just been to Jethro’s latest opthamology appointment and for the first time in Jethro’s life he can at last see in 3D. Just a small amount at this stage but it gives us hope it will..

129 likes, 18 comments1 week ago

Wear 2017s Rare Disease Day logo as your profile picture to help spread awareness and create advancements in research for cures and treatments

2 likes, 0 comments2 weeks ago

1 likes, 0 comments2 weeks ago

Very cool way to spread awareness for Rare Diseases. Rare Disease day is coming up this month, Feb 28th. Who has some ideas on ways we too can spread awareness?

11 likes, 0 comments2 weeks ago

10,000 hands to save a little boy’s life

Donate –

You’ve helped raise..

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