DID YOU KNOW…
Angioedema is an orphan’s disease with three distinct classifications?
Idiopathic Angioedema |
…comprises nearly 80% of all cases of angioedema—we are #The80Percent!—yet is less known than similarly, “new on deck,” conditions such as #Fibromyalgia and #Lupus. Alas, angioedema and mast cell activation disorders are finally gaining interest in the medical and pharmaceutical communities — now is the time for major financial philanthropy for genetic research, education, and outreach. Let’s keep the momentum going in the right direction for cause and cure for these rare conditions!!!
We have discussed our theory around challenges with many health professionals involved in this process and they have agreed with us, it is a numbers’ game.
Higher numbers of our population equates to what’s in it for them, (big pharma and researchers, alike) which is why your financial support, word of mouth participation regarding our ongoing campaigns for outreach, genetic research, online discussions, filmography and event planning really helps our effort’s and continued growth. With an even bigger involvement, we can expand at a pace closer to what we need–a pace in which there is far more time and resources available to save and improve upon the quality of lives of the people in this so very unique and overlooked, community
We feel it’s important to give people with idiopathic angioedema, mast cell activation and mental health challenges a chance to focus on time for living, and we know you agree!
Hereditary Angioedema |
…comprises just under 20% of all forms of the condition, has a great organization with great philanthropy, and although still an orphan’s disease, has established itself, at the very least, as being a condition of note meaning, unlike #The80Percent, it is officially on the map!
Bradykinin Mediated Angioedema |
… (Say what, now?!), comprises about 2% of all cases, worldwide! Oh, and I know those two people. 🙃 Not much is known about this most rarest form and, although sufferers mainly respond to medications as given to HAE patients, they do not receive nearly the same level of interest in research dollars and getting meds tailored specifically to the uniqueness of their disease. Again, the numbers.
Note: There are subclasses within each classification.
Please join us in getting some right attention around idiopathic and all forms of angioedema as well as the related conditions of #mastcellactivationdisorders, #anaphylaxis, #urticaria, and #Crohns.
Contact Us |
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As always, we appreciate your ongoing support. Disclaimer: Our page is a community service to our users. The information provided on this site is meant for informational purposes only. LifeWithoutAFork.com, Inc., The Idiopathic Angioedema Global Advocacy Group, and its employees and affiliates are not responsible for the accuracy of any information herein contained. You are encouraged to validate any information we provide with proper professional consultation.