Rare Disease Day 2-29-2012

[susan]

Hello;

I was complaining earlier that we do not have a voice due to the rare nature of HFI...so I googled "Activism For Rare Disorders" and found this.

"Rare Disease Day February 29, 2012"

Here is a link: www.rarediseaseday.org/

This might be something I am looking for. Susan

[charlie]

Hey, well found, I will read up on that later, had quick look and in Britain there is also link to genetic diseases site so will follow that up too. If we all do a little bit each in our areas that could mount up to quite alot all round

[sarosh]

How about someone speaking on TED? It is a good forum to get the word out.

[charlie]

I have contacted a popular daytime show This Morning here in GB as a possibility, would you be up for that Bill and Carolyn, I would try GMTV but that is a bit early in the mornings!!!!!

[ukbill]

Anything to help promote knowledge of the condition.

If going on Telly can I wear my corduroy trousers and grow a beard???

Would it help with my image?

OK I know what image!

GMTV is a bit late at night for me.. but I think I could manage.

(for those of you who don't know I work constant night shifts.. its the only option for an HFI vampire.)

PS not everything I post is true.. my sense of humour such as it is gets in the way sometimes, for example I sometimes work in the afternoon, so long as its cloudy.

[susan]

What if everyone e-mailed various TV programs (or other) on the same day?

Wouldn't that get more attention than an individual message?

What would the massage say to get the best and most attention?

Susan

[charlie]

Maybe we just need to bring HFI to attention using the can't eat factor and why, nowadays everyone is so obsessed with the must eat 5 portions of fruit and veg a day for good health ..... unless you have HFI when it could kill you, that always catches peoples sympathy and attention, especially when kids are concerned and can't have sweets and puddings.
Also just getting the word out there that there is this support board and the more that join that are diagnosed the more information we can accumulate about it.
Just having a few joined the other board with symptoms very similar to Megs makes the picture so much clearer and a familiar pattern of symptoms is showing. If people have a clear diagnosis and don't have any contact with others then they aren't getting any help themselves and they may have something useful to add to the mix.

[ukbill]

Governments react to peer groups and publicity.

HFI condition is rare but not that rare.. it simply very under diagnosed.

I am glad you have more people with identical symptoms to Megan's joining your site.. it will help immensely with Doctors in particular to prove that in their eyes you are not a psychotic mum..

I know you are not but they have a tendency to put down a lot of problems with eating to the parents conditioning or influence.

It should help with the school as well.

I bet Megs is excited.. she really is not alone.

[susan]

HERE IS SOMETHING ALL OF US CAN DO !


I just sent the web page of "Rare Disease Day" to Dr. Tolan's email.

In the subject line I put:
Please Do a Local TV / Radio interview for
Rare Disease Day ® 2012, Feb 29

mailto: [e-mail]