We Need Your Financial Support

Dear Eagle Community,
From the beginning of Ben’s Friends Rare Disease Communities, we have desired to provide these sites free of charge to our patients and their families. However, it costs us several thousand dollars a month to keep our 40+ rare communities up and running. Would you consider a tax-deductible contribution to Ben’s Friends? Your contribution will enable us to continue to provide this site now and in the years to come. Thank you.

Ben’s Friends is a 501(c)(3) charitable organization and contributions are tax-deductible for income, gift, and estate taxes. Our EIN is 46-3210142.


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Can you show some sort of budget? To show where the money goes? I think you offer a great service, but it’s kinda like sending money into a big cloud. #hours spent x minimum wage would look like what? How many moderators do you have? How much time do they put in? Upgrades to the application itself? Costs like that?

@Susinc - I will answer for the Living with Eagle forum regarding moderators & will guess at time put in. I can’t answer the financial questions so @Mod_support will need to reply to that.

There are 3 moderators on this forum - Jules, Henrik & me (Isaiah_40_31). I would guess that each of us puts in anywhere from 30 min to several hours/day on here. The moderators on all of the Ben’s Friends forums volunteer their time.

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Thank you.

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Hi Susan,

To answer your question, we have two main areas of operating cost which we have pared down in the last few months to just over $1,300 a month in technology and other costs and just under $1,300 a month in staff costs. We have four members of staff who receive payments at this time, totalling in recent months just under $1,300/month between them. For these costs, we have been able to operate over forty different rare disease or chronic condition support groups, including Living With Eagle.

Until we started asking for some donations yesterday, our donations were running at just under $300 in income per month: a significant gap. We do have much higher donations at Thanksgiving/New Year but not sufficient to get us through the year.

We are also wholly conscious that healthcare in the US and other countries is one of the most expensive things you might ever pay for and we do not charge a subscription fee as a consequence but we do have real costs; neither do we believe that carrying advertising is in patients’ interests.

We hope that by making you aware of our need, we are able to continue to operate our fantastically moderated support sites for patients by patients on a largely voluntary basis.

I hope this helps. If you have any further questions please do not hesitate to ask.

Patient Experience Officer
Ben’s Friends


That actually helps a lot. I will make a small contribution in the next few days. Being on SSDI, my charitable giving is pretty curtailed. But I can send $25. If that works for you.



I’d say that our appeal is not to you! It is for others better able to support us, support our rare disease patients. However, my experience is that those who have the least often give the most!

Very best wishes,



I didn’t realize this group was part of a such a larger effort with a lot more patient communities. This is great work!!

I’ve been officially diagnosed with 8 of the 40+ conditions covered in the Ben’s Friends communities/fora and am either previously suspected to have or currently testing for have another 4!! (Side note: all of these aren’t rare, like the more common ones, ADHD and dysatonomia).

I am glad to have found those other communities through this fundraising post. Hope others find more community and support his way as well.

While only a small amount, I just donated what I could manage to share. This group has been so helpful even though I’m not super active here.

Keep up the good work y’all and thanks for your energy and expertise, mods!


Thank you for your support, @A_Bluebird_Day! Every penny makes a difference. I know the Ben’s Friends Community appreciates you!! :

Thanks for posting the link to the other communities as well. I’m sure you’re not the only one who didn’t realize there are 40+ support groups under the auspices of Ben’s Friends.

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I’m glad that you’ve found other communities which should be helpful for you @A_Bluebird_Day , but sorry that you have so many rare conditions. Thank you for your generosity :hugs:

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