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The Erythromelalgia Association

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First off, if you don't know what Erythromelalgia is, it is listed as a rosacea mimic and should be ruled out in a differential diagnosis of rosacea. 

Someone kindly pointed out to me that The Erythromelalgia Association website is very user friendly and was impressed with the free Guide it offers on its website indicating to me that the RRDi needs to be more 'user friendly' and offering such a guide. So I decided to investigate and contacted TEA and asked for a copy of the latest Form 990 which was emailed to me and I have given a cursory investigation and am very impressed with how this 501 c 3 non profit organization spends its donations. 

First off, the board of directors are all volunteers. They have managed to bring in 3000 members, and more importantly in 2018 received over $50K in donations!  They spent $103K which breaks down to this: 

$75,000 for Grants and similar amounts paid (list in Schedule O) "Gift for research directly related to erythromelalgia"

$13,398 for Professional fees and other payments to independent contractors

$14,230 for Printing, publications, postage, and shipping (newsletter)

$884 for other expenses
Total Expenses $103,512

Download Form 990 for 2018 and read it yourself:
Form990Package.2018.pdf

So this is definitely how a non profit organization should be run and I give the highest marks possible to TEA for how it is helping Erythromelalgia sufferers. We wish that the members of the RRDi would be interested in imitating the TEA and help make the RRDi just like how TEA is run. The RRDi is very similar in how the board of directors are volunteers. We just need volunteers to step up to plate like the TEA volunteers are doing. It would be good for members of the RRDi to ask questions about the above or comment on this post. 

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