Disease Maps

[monkeybus]

diseasemaps.org/leukodystro...

What say, folks? Shall we all register and plot ourselves around the world?

[COwithAMN Administrator AMN EASIER Volunteer]

Looks interesting. Well done on spotting this. I have registered. I also tried to register AMNEasier but then it told me it didn't know about adrenomyeloneuropathy.

Looks like it's a Spanish initiative.

[Cherie in reply to COwithAMN]

It was a couple of years ago that I did it but I am on the map

[COwithAMN Administrator AMN EASIER Volunteer in reply to Cherie]

I saw, and guessed it was you!

[Cherie in reply to COwithAMN]

Are you going to the ald meeting this year? We are going.

[julie_ in reply to Cherie]

I was all set but now I'm not going. Unfortunate circumstances.

[Cherie in reply to julie_]

That's a shame. Hopefully I'll see you another year.

[COwithAMN Administrator AMN EASIER Volunteer in reply to Cherie]

Yes, we are going.

[monkeybus in reply to Cherie]

Hello, where/when is this meeting?

[Cherie in reply to monkeybus]

If you go to ALDLife website it will give you the details. It is 4th - 7th May at the Crowne Plaza in Docklands

[monkeybus in reply to Cherie]

Thanks a lot. I may well be there.

[julie_]

Registered! Anonymously

[monkeybus]

I just got round to registering. London.

It would be good to see where we all are. All anonymous, naturally.

Anyone else?

[Cherie]

I have a friend who would like to come but is having problems with getting there. Does anyone live near Leighton Buzzard or coming past?

[Andrew-432]

I have now registered Derbyshire is on the map

[SusanBr]

Just joined 😀😀

[bsc78]

Interesting. Why we're at it, let's register with ALD Connect's Patient Portal and put your ALD/AMN experience to work! It is made up of patient surveys to inform researchers about disease progression, symptom severity, and what matters to patients/caregivers. nctu.partners.org/ALD/

[SongStream]

I joined as well in good company. (Btw "Disease Maps" sounds like a measure used in a thriller movie depicting diseases gone rampant.)