It's brand new and there is nothing else quite like this in the world, at least for ALD. The goal is simple: a secure area dedicated to ALD where we can share our problems, successes, tips and cautions. We want you to post, comment and experiment with the development of this website as much as possible. We want input from people involved with ALD, friends and family and clinicians. Please spread the word.
You're currently looking at what will shortly evolve into a proper group blog made up of different people within the ALD community. Blogs are great ways to tell your story or journey in instalments. Or they can be used to make observations or comment on news or developments within the world of ALD. You might even think about writing a blog yourself. (If so you can request to become a blogger at the top of this page).
The Helpvine is like an online helpline in which you will be able to find questions and answers to a whole host of different issues raised by people like you. Previous questions will be 'tagged' to make it easier for you to search and find answers. If you can't find an answer then feel free to ask your question. A panel of different volunteers will receive the question and hopefully be able to provide an answer.
The 'Big Question' is where we can all find out some home truths about key questions in ALD. We all provide a response to the question and can see what the group feels as a whole. It's a bit of democracy in action!
We have the potential to really find out more about what really goes on with ALD in peoples’ lives with this new website.
Please join and try engaging and participating in the system. You will help others with your knowledge as others will hopefully help you.
Here is a little video from HealthUnlocked explaining the point of the system. youtube.com/watch?v=a3Q4htk...
There's also a little green tab on the right hand side of the page. Try pressing it. You then select to feed back a question, a problem, a suggestion or (even) just praise!
Please watch this space for blogs that will be appearing here soon.