Hi everyone,

It's Marta...the one with the perpetual flow of crazy ideas.
I'm working on a new one, and would love some feedback.

As a background, I should tell the newer people on here that a few years back I put together a small ten question survey that with the help of Andrew's promotion on here, got just over 1,000 Weggie respondents, and subsequently was used to publish an article in a French Rheumatology Journal supporting the fact that patient driven data is just as reliable as official research driven data. So thanks to this site, Andrew, and it's users, we are that much further in validating our knowledge and experience as research worthy.

Now... my new crazy idea.

I would like to build an app for people with autoimmune disease. In my experience, the issues we are having are pretty much duplicated in the over 140 other autoimmune disease groups and by bringing attention to the disease as a whole, we will have not only more visibility, but also a greater chance of finding a cure. If a cure is found for MS, or Lupus, or RA, then a cure is found for us and vice versa. That is if it is a true cure, addressing the etiology of autoimmune disease where the immune system turns on healthy tissues. That being said, I think that if we build an app that can help the patient with their everyday life with Wegener's, we can also help a number of other patients dealing with other autoimmune diseases. While helping patients in the foreground, we could gather data in the background that could help us in our goal to educate researchers, to motivate legislators and funding with metrics, and to bring this disease to the forefront of cultural awareness. We are with autoimmune today, where cancer was in the 70's. The general public (and even some medical practitioners) are quite clueless as to the scope, the cost (both financial and human,) and the potential positive gain society can accrue from eliminating this disease. By gaining these metrics (excluding personal information) we can move our cause forward a hundred fold.

So here's my question for you. What kinds of elements would you like to see in an app that helps you deal with your Wegener's?
Below are some ideas to get the communal brainstorm churning.

Disease:
Diagnosis
Date of diagnosis
Age at diagnosis
Family history of AI disease

Meds:
what kind
daily reminder
reminder for next purchase
supplements

Doctor's Appointments:
Dates
Transportation to and from
Who's coming with you
Questions to ask
Notes from doctor's visit
What specialists are you seeing

Cost:
meds
getting to and from doctors appointments
parking
homecare
living aids
therapies
special foods

Food:
special diet requirements
delivery

Work:
time off
family taking time off for support
required paperwork
human resources/bosses contact
tax info for later deductions
retraining for new line of work

Symptom tracker

Physical rehabilitation

Emotional/Psychological rehabilitation

Support groups and contacts

... and of course have the option for more than one disease since as we all know, if you have one autoimmune disease, then you're more likely to acquire another flavour of AI disease.

So there. Here's the start and idea fodder. I have a few thousand dollars to play with from our foundation, and I'd love to use it wisely so that we can start getting the attention we need to further our cause (that being a cure.) Unlike many charities that make a business out of being a charity, I'm actually looking towards finding a cure and giving the people working for charities an opportunity to find something different to do - save animals, or feed the hungry, etc. I want to see autoimmune disease eradicated, and at this point in my life, I think this might be a good way to start the process.

Peace out y'all. I can't wait to see the brilliant ideas to follow.

Much love.