You’ve heard of diabetes—it affects millions of people every day. We all know at least one person dealing with the consequences.
But how about “Adrenal Insufficiency” or “Acromegaly”? These “rare diseases” or conditions are not as pervasive, yet affect the lives of 100’s of thousands every day. How does a community with a lesser known, yet potentially equally devastating health condition, get the attention it needs? For the Acromegaly Community, connecting people was the key. Working with SocialRaise to create an online community providing social and emotional support for patients and their loved ones, the web platform also enables them to educate the medical community on the patient’s perspective and emotional needs.
The size of the community doubled in the first week of launching, driving donations from industries and individuals, too.
Adrenal Insufficiency United had all the same needs, plus an additional hurdle—there are no established standard emergency protocols for adrenal crisis. Without those protocols, children and adults with the disorder could be severely injured or die from receiving the wrong treatment. Education for the medical community is key—both online and in person. In order to drive the creation of standard protocols, the AI United team are speaking at a series of specific health care conferences and taking those opportunities to meet with policy makers. SocialRaise is enabling the fundraising for each of these trips by adding a crowdfunding strategy with technology to their content management solution. AI United’s success will insure those affected by AI can count on getting the appropriate diagnosis, prompt treatment and the support they need to manage their disease--and successfully live their lives.