# News **URL:** https://forum.livingwitherythromelalgia.org/c/bens-friends/news/24.md [Latest](https://forum.livingwitherythromelalgia.org/latest.md) · [Categories](https://forum.livingwitherythromelalgia.org/categories.md) · [Tags](https://forum.livingwitherythromelalgia.org/tags.md) --- ## [About the News category](https://forum.livingwitherythromelalgia.org/t/about-the-news-category/1696)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0
News from Bens Friends - --- ## [Today is Giving Tuesday. Here Are Two Easy Ways to Help Our Community](https://forum.livingwitherythromelalgia.org/t/today-is-giving-tuesday-here-are-two-easy-ways-to-help-our-community/6577)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 2, 2025, 3:24am UTC](https://forum.livingwitherythromelalgia.org/t/today-is-giving-tuesday-here-are-two-easy-ways-to-help-our-community/6577 "2025-12-02T03:24:10Z")
Hi everyone, Today is Giving Tuesday, a day when many people look for meaningful causes to support. If you would like to help our community today, here are two simple and meaningful options. 1) Share our campaign with … --- ## [Our Community Is Coming Together. Here Is How You Can Help](https://forum.livingwitherythromelalgia.org/t/our-community-is-coming-together-here-is-how-you-can-help/6572)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 25, 2025, 5:53pm UTC](https://forum.livingwitherythromelalgia.org/t/our-community-is-coming-together-here-is-how-you-can-help/6572 "2025-11-25T17:53:39Z")
Hi everyone, As we approach the end of the year, our entire Ben’s Friends network is launching our annual community support campaign. Each forum plays an important role, so we wanted to share a few simple ways you can h… --- ## [Last Chance to Support Ben’s Friends in 2024 - Every Donation Counts!](https://forum.livingwitherythromelalgia.org/t/last-chance-to-support-ben-s-friends-in-2024-every-donation-counts/6433)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 30, 2024, 10:02pm UTC](https://forum.livingwitherythromelalgia.org/t/last-chance-to-support-ben-s-friends-in-2024-every-donation-counts/6433 "2024-12-30T22:02:40Z")
As we count down the final hours of 2024, I want to personally thank the 100+ donors who have already contributed over $27,000 to our Friends Helping Friends campaign. Your generosity is nothing short of inspiring, and … --- ## [From Isolation to Connection: The Role of Community Support](https://forum.livingwitherythromelalgia.org/t/from-isolation-to-connection-the-role-of-community-support/6428)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 19, 2024, 7:48pm UTC](https://forum.livingwitherythromelalgia.org/t/from-isolation-to-connection-the-role-of-community-support/6428 "2024-12-19T19:48:33Z")
As we approach the end of our year-end campaign, I wanted to share a powerful reminder of the impact your support makes. A Message from the Heart: We’ve just received an incredibly moving video from Jaz, one of our com… --- ## [See How Ben's Friends Changes Lives + Double Your Impact](https://forum.livingwitherythromelalgia.org/t/see-how-bens-friends-changes-lives-double-your-impact/6427)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 16, 2024, 8:25pm UTC](https://forum.livingwitherythromelalgia.org/t/see-how-bens-friends-changes-lives-double-your-impact/6427 "2024-12-16T20:25:55Z")
Campaign Update: If you have already donated to the campaign, THANK YOU. We are well over $15,000 for the campaign and the Matching Gift Challenge is really heating up (over 20 donors have already had their donations ma… --- ## [Exciting Update: Double Your Impact for Rare Disease Support!](https://forum.livingwitherythromelalgia.org/t/exciting-update-double-your-impact-for-rare-disease-support/6426)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 13, 2024, 12:06am UTC](https://forum.livingwitherythromelalgia.org/t/exciting-update-double-your-impact-for-rare-disease-support/6426 "2024-12-13T00:06:24Z")
I hope this message finds you well. As we approach the end of the year, I wanted to share an exciting update on our “Friends Helping Friends” campaign and a special opportunity to double your impact. Campaign Progress: … --- ## [This Giving Tuesday, Make Sure No One Faces Rare Disease Alone](https://forum.livingwitherythromelalgia.org/t/this-giving-tuesday-make-sure-no-one-faces-rare-disease-alone/6425)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [December 2, 2024, 10:02pm UTC](https://forum.livingwitherythromelalgia.org/t/this-giving-tuesday-make-sure-no-one-faces-rare-disease-alone/6425 "2024-12-02T22:02:29Z")
As we approach the end of the year, I’m reaching out with an urgent request on behalf of thousands of patients with rare diseases and chronic illnesses who rely on Ben’s Friends for support and connection. Our mission i… --- ## [📢 Calling mothers of children with rare diseases of all ages](https://forum.livingwitherythromelalgia.org/t/calling-mothers-of-children-with-rare-diseases-of-all-ages/6206)
**Author:** [@ModSupport](https://forum.livingwitherythromelalgia.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [August 12, 2023, 6:15pm UTC](https://forum.livingwitherythromelalgia.org/t/calling-mothers-of-children-with-rare-diseases-of-all-ages/6206 "2023-08-12T18:15:30Z")
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Please share the community with other families who are affected. 70% of ra… --- ## [Shop With AmazonSmile This Summer And Help Change Patients Lives](https://forum.livingwitherythromelalgia.org/t/shop-with-amazonsmile-this-summer-and-help-change-patients-lives/5951)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 13, 2022, 8:51pm UTC](https://forum.livingwitherythromelalgia.org/t/shop-with-amazonsmile-this-summer-and-help-change-patients-lives/5951 "2022-06-13T20:51:10Z")
Father’s Day. Graduations. All Summer Needs.:sunglasses: Do some “feel-good” shopping and change a rare disease patient’s life today. Go to smile.amazon.com Click “Get started” Once signed in, you will be prompted to… --- ## [DickD Reflects -- Full Article](https://forum.livingwitherythromelalgia.org/t/dickd-reflects-full-article/4381)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 15, 2019, 10:35pm UTC](https://forum.livingwitherythromelalgia.org/t/dickd-reflects-full-article/4381 "2019-11-15T22:35:17Z")
Ever Wondered What it’s like to be a Ben’s Friends Moderator? At the heart of Ben’s Friends are our Moderators, who play varied and interesting roles. Our communities wouldn’t be the same without them: they’re central t… --- ## [A Word about Covid Vaccines](https://forum.livingwitherythromelalgia.org/t/a-word-about-covid-vaccines/5774)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [January 3, 2022, 9:56pm UTC](https://forum.livingwitherythromelalgia.org/t/a-word-about-covid-vaccines/5774 "2022-01-03T21:56:41Z")
"Whether or not you choose to get vaccinated is a personal choice. Somehow, someway choice has become a political statement. Ben’s Friends Communities are for peer to peer support, not politics. While Covid is a concern … --- ## [Check out the Ben's Friends Blog](https://forum.livingwitherythromelalgia.org/t/check-out-the-bens-friends-blog/5762)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 30, 2021, 4:00pm UTC](https://forum.livingwitherythromelalgia.org/t/check-out-the-bens-friends-blog/5762 "2021-11-30T16:00:10Z")
Be sure and check out our Blog for the latest on Ben’s friends patient communities and the Disease/Conditions that we provide patient support for: https://blog.bensfriends.org/ --- ## [New! Caregiver Support Community](https://forum.livingwitherythromelalgia.org/t/new-caregiver-support-community/5741)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 11, 2021, 4:59pm UTC](https://forum.livingwitherythromelalgia.org/t/new-caregiver-support-community/5741 "2021-11-11T16:59:35Z")
We know. Being a caregiver is tough: sometimes it’s challenging physically, and it’s always difficult socially and emotionally. That’s why caregivers now have a place to meet anonymously and support each other. Today we… --- ## [How is a Ben's Friends Community Different from Social Media and other Support Sites?](https://forum.livingwitherythromelalgia.org/t/how-is-a-bens-friends-community-different-from-social-media-and-other-support-sites/5610)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [July 14, 2021, 9:09pm UTC](https://forum.livingwitherythromelalgia.org/t/how-is-a-bens-friends-community-different-from-social-media-and-other-support-sites/5610 "2021-07-14T21:09:43Z")
Are you wondering how a Ben’s Friends community is different from social media and other support sites? The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and you an… --- ## [BIG Covid Vaccine Questions](https://forum.livingwitherythromelalgia.org/t/big-covid-vaccine-questions/5437)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [March 15, 2021, 10:03pm UTC](https://forum.livingwitherythromelalgia.org/t/big-covid-vaccine-questions/5437 "2021-03-15T22:03:09Z")
New members arrive at Ben’s Friends with lots of questions, as well as a need for social support. That’s why we’re here. But these days the really big questions on peoples’ minds are about Covid vaccines. The advice we … --- ## [Here for you: Ben's Friends](https://forum.livingwitherythromelalgia.org/t/here-for-you-bens-friends/5291)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [December 22, 2020, 6:19pm UTC](https://forum.livingwitherythromelalgia.org/t/here-for-you-bens-friends/5291 "2020-12-22T18:19:10Z")
Yes, it’s been a long, tiring, frustrating year. And the holiday season isn’t always the easiest time for our members. If you are feeling lonely, or you just need to touch base and talk, please remember that your Ben’s … --- ## [History Lesson From TJ and Immunization](https://forum.livingwitherythromelalgia.org/t/history-lesson-from-tj-and-immunization/5289)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [December 21, 2020, 5:20pm UTC](https://forum.livingwitherythromelalgia.org/t/history-lesson-from-tj-and-immunization/5289 "2020-12-21T17:20:53Z")
Finally we have a covid vaccine. I am amazed at the kick back from the Anti Vaxxers seeing it as an assault on our Freedoms. I’m a scientist but educated in Jesuit University where History (among other things) were part … --- ## [Down? We understand: we're ALL feeling it](https://forum.livingwitherythromelalgia.org/t/down-we-understand-were-all-feeling-it/5266)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [December 8, 2020, 5:38pm UTC](https://forum.livingwitherythromelalgia.org/t/down-we-understand-were-all-feeling-it/5266 "2020-12-08T17:38:38Z")
FEELING DOWN? RECONNECT WITH YOUR BEN’S FRIENDS COMMUNITY! We all know that this pandemic is taking its toll on mental health, and the CDC has published an excellent article that we think is worth a look. ( The link is … --- ## [Depression and Autoimmune and Chronic Illnesses](https://forum.livingwitherythromelalgia.org/t/depression-and-autoimmune-and-chronic-illnesses/5239)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 18, 2020, 3:29pm UTC](https://forum.livingwitherythromelalgia.org/t/depression-and-autoimmune-and-chronic-illnesses/5239 "2020-11-18T15:29:00Z")
One of the things the Ben’s Friends team always tries to emphasize in the communities is to never to feel guilty for being depressed. Instead, members are encouraged to seek help from medical experts as well as ask and p… --- ## [Ben’s Friends Secrets To Maintaining Healthy Communities](https://forum.livingwitherythromelalgia.org/t/ben-s-friends-secrets-to-maintaining-healthy-communities/5234)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 17, 2020, 6:44pm UTC](https://forum.livingwitherythromelalgia.org/t/ben-s-friends-secrets-to-maintaining-healthy-communities/5234 "2020-11-17T18:44:51Z")
Ben’s Friends has been successfully running online patient communities for thirteen years and it just continues to grow. We are home to the most active communities of AVM survivors, people living with psoriatic arthritis… --- ## [Vaccine protocols and COVID](https://forum.livingwitherythromelalgia.org/t/vaccine-protocols-and-covid/5220)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [November 12, 2020, 5:51pm UTC](https://forum.livingwitherythromelalgia.org/t/vaccine-protocols-and-covid/5220 "2020-11-12T17:51:43Z")
Basic protocols never change based on a particular set of circumstances. In the cases of vaccines, those protocols are not only determined by local (that is, national) regulatory boards but also by an international board… --- ## [The Ben’s Friends Volunteer Family is Growing!](https://forum.livingwitherythromelalgia.org/t/the-ben-s-friends-volunteer-family-is-growing/5006)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [July 31, 2020, 2:08pm UTC](https://forum.livingwitherythromelalgia.org/t/the-ben-s-friends-volunteer-family-is-growing/5006 "2020-07-31T14:08:14Z")
Just like that, Ben’s Friends already has about a dozen new interns being trained in our brand new (“the virtual paint’s still drying”) Google classroom. It was only a few months ago when we created: https://blog.bensfr… --- ## [Ben’s Friends Communities Are Getting a Fresh New Look!](https://forum.livingwitherythromelalgia.org/t/ben-s-friends-communities-are-getting-a-fresh-new-look/4996)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [July 28, 2020, 2:17pm UTC](https://forum.livingwitherythromelalgia.org/t/ben-s-friends-communities-are-getting-a-fresh-new-look/4996 "2020-07-28T14:17:24Z")
We’re so excited to announce that our community sites will soon have a fresh new look. Compared with the old one, members will notice a much cleaner site. The colors will be fewer and complementing so that it will be mor… --- ## [Scholarship Opportunity For Rare Patients](https://forum.livingwitherythromelalgia.org/t/scholarship-opportunity-for-rare-patients/4992)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [July 27, 2020, 5:49pm UTC](https://forum.livingwitherythromelalgia.org/t/scholarship-opportunity-for-rare-patients/4992 "2020-07-27T17:49:57Z")
Living with a rare disease means managing unique challenges, including frequent doctor visits, rigorous treatment regimens and hospitalizations, and exposure risks. While quality and duration of life continues to improve… --- ## [Join our Team of Awesome Volunteers!](https://forum.livingwitherythromelalgia.org/t/join-our-team-of-awesome-volunteers/4954)
**Author:** [@Staff\_BensFriends](https://forum.livingwitherythromelalgia.org/u/Staff_BensFriends)\ **Replies:** 0\ **Last updated:** [July 6, 2020, 10:37am UTC](https://forum.livingwitherythromelalgia.org/t/join-our-team-of-awesome-volunteers/4954 "2020-07-06T10:37:56Z")
As you probably know, your wonderful community, Living With Erythromelalgia, is run by volunteers. Because of fellow rare disease patients, their friends and family, who donate some of their time, we have safe and suppo… --- ## [Sleep and Activity Research Study Headed Your Way](https://forum.livingwitherythromelalgia.org/t/sleep-and-activity-research-study-headed-your-way/4913)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [June 8, 2020, 4:11pm UTC](https://forum.livingwitherythromelalgia.org/t/sleep-and-activity-research-study-headed-your-way/4913 "2020-06-08T16:11:25Z")
Ben’s Friends regularly receives requests to make our members aware of various studies and drug Trials. Most we decline or ignore. We pass these on to you only if they satisfy our stringent vetting process. While some of… --- ## [Worldwide COVID 19 Response: Moving Forward Based on “Science”](https://forum.livingwitherythromelalgia.org/t/worldwide-covid-19-response-moving-forward-based-on-science/4866)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 19, 2020, 2:24pm UTC](https://forum.livingwitherythromelalgia.org/t/worldwide-covid-19-response-moving-forward-based-on-science/4866 "2020-05-19T14:24:16Z")
Worldwide COVID 19 Response: Moving Forward Based on “Science” In dealing with this whole COVID thing, I have heard over and over that we will move forward based on “Science”. It sounds good, makes sense, and even tends… --- ## [THE SCIENCE OF HELPING OUT: good for you!](https://forum.livingwitherythromelalgia.org/t/the-science-of-helping-out-good-for-you/4850)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 12, 2020, 3:22pm UTC](https://forum.livingwitherythromelalgia.org/t/the-science-of-helping-out-good-for-you/4850 "2020-05-12T15:22:03Z")
Helping others is good for your body as well as your mind. That’s what the article in the New York Times said, anyway. Who knew! I went on to read the entire piece by Tara Parker-Pope. The link to the article is at the e… --- ## [Medical School Hopeful? Stuck at Home? Volunteer Online!](https://forum.livingwitherythromelalgia.org/t/medical-school-hopeful-stuck-at-home-volunteer-online/4844)
**Author:** [@Bens\_Friends](https://forum.livingwitherythromelalgia.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 8, 2020, 1:46am UTC](https://forum.livingwitherythromelalgia.org/t/medical-school-hopeful-stuck-at-home-volunteer-online/4844 "2020-05-08T01:46:26Z")
Do you know someone who’s sheltering in place, and who aspires to medical school or one of the helping professions? They may be interested in this volunteer opportunity at Ben’s Friends. Please pass this on! We have a l… [Next page](https://forum.livingwitherythromelalgia.org/c/bens-friends/news/24.md?page=1)