Haemophilia Support

[StrangewaysHereICome]

hi does anyone know of any organisations or charities that offer support to parents of children with haemophilia?

Many thanks

[cupcakelover1983]

Hi I'm a carrier of haemophilia but luckily DS didnt inherit it. I found a lot of information provided by the haemophilia society very useful. You could also ask at your local haemophilia centre as other parents may have set up a support group there. I hope that helps!

[StrangewaysHereICome]

Thanks cupcakelover. Thank goodness your DS didn't inherit it.

I'll check out the Haemophilia society.

[OhTheConfusion]

Hi just saw this post when having a rake for something completely different, however, DBro has haemophilia (as do other family members). The haemophilia society (UK) is a good source of information as well as the national haemophilia foundation (USA). They both provide upto date information regarding new treatment developments, upcoming trials etc.

Your consultant / haemophilia nurse should also be able to tell you if there are any local groups (just give the unit a call).

[jabs284a]

Hi I was just looking through when I came by your post. I'm second gen (a carrier of Haem A with reduced levels as females can't get Haemophilia) and my Ds is 3rd gen Severe. Yep look at the Haemophilia Society, also depends on your local centre as to what they can help with. The one we go to is the Oxford Haemophilia Centre. They have a "Prickles Club" for the under 5's and try to hold a Summer and Christmas event for everyone to get together. To be perfectly honest the treament is so good nowerdays that it's not often you get to see others in the area, unless you bump into them at your regular check ups. There are a few FB pages re Haemophilia's but like forums you have to take the good with the bad. Good luck with your search.