Is there anyway I can raise awareness of Hughes and tell my story
How can i: Is there anyway I can raise... - Hughes Syndrome A...
How can i
![rach1081985 profile image](https://images.hu-production.be/avatars/24d67bea8bf0ee75f24a969da160722b_small@2x_100x100.jpg)
![rach1081985 profile image](https://images.hu-production.be/avatars/24d67bea8bf0ee75f24a969da160722b_small@2x_100x100.jpg)
![MaryF profile image](https://images.hu-production.be/avatars/4aa31037d5199b736f140d390fae072b_small@2x_100x100.jpg)
Hi, if you decide to do anything in the media, which some have done, we can then probably put it on the charity website, it can be a bit daunting though using the media, think about it carefully first, Sometimes you can give talks via your local hospital, I know some have done that also, TJSTICKYBLOOD is busy doing that at the moment. MaryF
![lupus-support1 profile image](https://images.hu-production.be/avatars/e60848d5d97d050f4bc35434079f5f73_small@2x_100x100.jpg)
You are very welcome to write a Blog at LUpus Patients Understanding & Support (LUPUS): the LuPUS Message Board.
You will have to register to access everything - to stop spammers, stalkers, bots etc
Everything is free. You can write as much as you like - a daily, weekly, monthly journal etc
Let me know if you are interested
Thank you very much yes that woukd be great if you could help me
Register at lupus-support.org.uk
For DOB: Please use the n-nn-nnnn format where = number
If your birthday is 4th April 1989: 04-04-1989
Make sure you use the "-" & not "/"!!!
Any problems, let me know.
You can the set up a Blog - you can ask for help if necessary.
There is a great deal of information at the LuPUS MB - it's free for everyone! It is more private - only registered users have access to forums. No spammers/stalkers/bots!
With good wishes,
Ros
I forgot to mention , you might like to check out heart-valve-surgery.com
For ideas on how to promote awareness of a health topic. Adam Pick is the founder, and he has done a great job if educating folks on this topic.
Kerstin
Sorry for the late reply as I’m on holiday but I have messaged you about my expert patient work.
Thank you very much xx I did c xx