Well I just had another idea. Sadly, there isn't enough time left in this century for me to follow through with all of my ideas. Perhaps some others will think it's a good idea, grab the ball and run with it. I used a football analogy because the charitable organization called Uplifting Athletes gave me the idea. Their concept is simple. College football teams around the United States can choose to adopt a rare disease and raise funds for that disease. I've mentioned this organization before in the hopes that one of our supporters might know of a friend or family member on a college team that might want to start a chapter at their school for the IHRF.
As a side note, I've recently heard from another mother of an IH kid that is having difficulty finding knowledgeable medical support for her child where they live. With 7,000 rare diseases in the NORD database, it does not surprise me that anyone has difficulty finding medical support for IH. Which leads to my idea...if football teams can adopt a rare disease, why can't medical organizations in every state, city, and town around the US/World adopt a rare disease? Not as a fundraiser, but as a way to gain more knowledge about a particular rare disease.
I'm thinking about a simple method of encouraging every doctor's office building, physical therapy businesses, laboratories, hospital help lines, etc. to pick one or a few rare diseases to adopt. They can learn as much as possible about the rare disease and committ to staying up to date with the latest developments. The one or more RNs, LPNs, Therapists, or whoever adopts the rare disease in each building could be the "goto" person for information about that disease. If every medical office in a town/city/state adopted just one rare disease, the odds go up that just about every rare disease would have a "local" advisor to help answer questions for patients with rare diseases.
Wouldn't it be nice to be able to talk with a medically knowledgeable person in your hometown or nearby city about your rare disease? They wouldn't be able to give medical advice, but at least they would understand your rare disease and give you pointers on where to go for more detailed information.
Oh well; it's just an idea and maybe I'll have time to act on it someday.