Updated February 13, 2012
Skin cancer communities:
- Basal cell carcinoma
- EmpowHER: an actual basal cell community – sweet! Major props to my chorus buddy Kurt Boutin!
- PatientsLikeMe basal cell skin cancer (Thanks to Robert Dellavalle)
- Generic skin cancer
- American Cancer Society: http://csn.cancer.org/forum/145 (Thanks to Jamie Toth)
- Inspire.com: http://www.inspire.com/groups/skin-cancer/ (Thanks to SCAD sister Laura Haywood)
Kidney cancer:
__________________________________________________
To join the ACOR kidney cancer mailing list:
Send an email to LISTSERV@LISTSERV.ACOR.ORG
with this in the body (not subject) of the email: SUBSCRIBE KIDNEY-ONC
You’ll get a robotic reply.
Within a day or so your request should be approved.
I recommend that you watch the email stream for a day or two
so you get a feel for the conversation,
then send an email to the list kidney-onc@listserv.acor.org
describing your situation.
__________________________________________________
Others
This is the very beginning of a list of patient communities. Additions are welcome by commenting below.
Please note:
I don’t have the resources to check these out myself.
As with everything you do online, “shop wisely.”
And my advice is: Never assume that any one source is perfect -
no patient community, no book, no web site, no physician, no nothing.
You are responsible for the information you gather;
check and re-check.
- ACOR: Here’s a master list of ACOR cancer patient communities.
- An ACOR community is not web based; it’s just an email list (Listserv®). You subscribe and unsubscribe by email.
- All ACOR lists work the same; as you’ll see, each has a name, e.g. KIDNEY-ONC for kidney oncology and NHL for Non-Hodgkins Lymphoma. Look for your cancer, and click it.
- You subscribe or unsubscribe to an ACOR list by simply sending a special email to a particular address. Instructions are on each disease’s page.
- For instance, here’s what it says for non-Hodgkins lymphoma (the “NHL” list):
“To subscribe, send mail to LISTSERV@LISTSERV.ACOR.ORG
with the command (paste it!): SUBSCRIBE NHL” - ACOR has communities for many cancers; some groups are big and busy, some are small and not very active.
- July 11: I’m adding three “big dog” sites that I somehow left out at first: (Why didn’t you guys yell at me???)
- Inspire.com has a large list of communities.
- Patients Like Me used to be primarily for some neurological conditions but their fabulous software is now available for any disease.
- CureTogether has communities for a number of conditions
- Webicina is a great website that’s a growing library of resources for e-patients.
- Here is their list of patient community sites. It doesn’t yet identify which cancers each site supports, so you have to open each one and look. (Disclosure: I’m an unpaid advisor to this site.)
- Andrew Spong / patient communities is a StumbleUpon list curated by U.K. friend Andrew Spong.
- Dose of Digital has a list.
- Commenter Elaine Finn added her list on Patient Loving Care.
- RareShare, “a unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders..”
- Encephalitis Global is described in this post on e-patients.net.
- Preeclampsia Forum for patients that have or had preeclampsia or other hypertensive diseases in pregnancy. The website is informative and the forum (link below) is a great support and information network. – from SPM member Ileana Balcu
- “CancerConnect.com … offers comprehensive cancer information, organized by disease and stage. It is also a free social network for patients, survivors, and caregivers. Members can join one or more of the many ‘communities’ offered.” – from Laurie in a comment below
- Social Medicine, dozens of disease specific communities.
- Crohn’s Disease (and sometimes colitis):
- Crohnology.com (thanks Ryan Witt)
- Crohnsforum.com (Ken Spriggs et al)
- Crohn’s on Angelfire.com: list of Crohn’s organizations by continent (via Kathi Apostolidis)
- ISCC Irish Society for Crohn’s and Colitis (via Kathi again)
- For Parkinson’s Disease see this post (Jan. 2012) with resources from Peter Schmidt of the National Parkinson Foundation.
- Eye Diseases: a community on Inspire.com was added below by Brhamesh.
Do you know of other patient communities? I know there are many more. Post them in a comment below, and I’ll add them here when I can.
________
Addition suggested in comments below:
- Places to find clinical trials:
When an accepted treatment doesn’t exist, or has failed, clinical trials for unreleased drugs can offer additional options.
Dave,
I’d be delight if you’d list our clinical trial index as a resource. We don’t attempt to monetize anything. Our privacy policy is simple, straight forward and as it should be. http://clinicaltrialselect.org/privacy.php
Thank you.
Etienne Taylor
Comments submitted on another page. (All suggestions have been added to the post above.)
Daniel Hooker
May 4th, 2011 at 10:00 pm
This page at Dose of Digital does track of patient communities. http://www.doseofdigital.com/healthcare-pharma-social-media-wiki/
Though it looks to be a thorough list, it isn’t searchable (in a database sense) and doesn’t break down by supported disease/condition. What I do like about the list is that it identifies any controlling pharmaceutical interest in the community–something that often isn’t obvious from the sites themselves.
It would be great if we could figure out solution for getting what we need out of a database like this one. I do wonder if perhaps we could crowdsource it by contributing to Wikipedia or another public tool? I’d love to see something like this take off.
———
Andrew Spong
May 5th, 2011 at 9:45 am
Hi Dave
I curate a list of patient communities on StumbleUpon:
http://www.stumbleupon.com/stumbler/andrewspong/tag/patient-community/?grid
Andrew
@andrewspong
Best one I know: http://patientslikeme.com/
http://www.caringbridge.org/ is a nice one, too.
PS – Dave, this page is ONE example of many values patients want, ask for and need. I think we need ONE, “organized gang” of patients.. something like a “Society for Patient Interests” – to focus on only “patient” needs (in resources, organizing of resources, advocacy, education, empowerment, etc). This could be a project of the Society of Participatory Medicine, much like e-patients.net is. What do we think? How can current patient leaders spearhead such organization, if it’s agreed to be useful for patients?
PS,2 – Is this an idea I should propose here or elsewhere? I don’t want to crowd up this page with this discussion…
Ryan,
I used Caringbridge myself, but it’s not a community, right? It’s what you might call an individual journal or blog site, but not a place where people with a disease congregate and compare notes.
PatientsLikeMe most definitely is though.
You can propose anything you want on this site, but it has a smaller audience than the members’ listserv and the Society for Participatory Medicine…:) I doubt that one single massive patient group (which would, ultimately, include *everyone*) would be ideal for everyone, but who knows, others might agree.
My personal criterion is, can any given patient find info that will make a difference to them, and if so, how easy is it?
p.s. Stop thinking your comments are clogging anything up! :) Speak up! Express yourself! Be empowered.
btw, Ryan, revisiting your May 9 suggestion for a one-stop list of patient resources – why don’t you go to the Society for Participatory Medicine’s member listserv (I presume you’re a member) and propose starting that??
Excellent question, my friend! Once I get settled with finding a salaried job and the move (family completes moving into new place this Monday!), I’m planning to post a few ideas lingering in my head and get more active in the Society and patient advocacy/empowerment.
Quick Question, btw: I’m on the Patient Needs WG for Patients 2.0 / Health 2.0 in SF this year. We’re trying to discover what Patients need right now is. Any ideas? =) I like the idea of continuing along the patient empowerment movement, by striving to define what we feel ‘empowerment’ should be and needs to encompass. I’m going to post this question on the listserv, as well.
I have a small but growing list here, organized by condition:
http://www.patientlovingcare.com/p/patient-care-links_14.html
Thanks, Elaine!
High five and sincere thanks for adding Encephalitis Global to your list of patient communities, Dave!
I’m sure you’re familiar with one of my favourite phrases… “I’m dancing as fast as I can!” Well, that dance somehow gets a bit easier when a friend joins in.
Again, our sincere thanks to you!
Here is a consumer health portal that aggregates highly focused content on both traditional and alternative medical treatments for chronic diseases. The first disease indexed contains over 6,000 medical journal articles broken down into the top 200+ categories for ulcerative colitis. There will be another 8 or so diseases added in the next three to four months.
What is unique about this index is that it was compiled using consumer search data plus over 20 custom medical databases (and a slew of algorithms) so that it represents the collective wisdom of millions of data points from patients and physicians. The information is near real time (updated a couple of times a month).
This is a new data content approach that aims to solve a few problems: a) Patients do not always know what questions to even ask or topics to search for b) Content sites become stale as information in medicine changes all of the time c) Information needs to be very focused and if there are only four articles on the topic, this approach can find those four articles and not a 1,000 unrelated articles.
This page is the disease overview http://mymedicalfinder.com/all-uc-topics and homepage is here http://mymedicalfinder.com .
In full disclosure, I am the co-founder. There is no commercial content indexed. Feedback is definitely welcome.
Thank you.
Dave,
We’d love it if you’d post a link to The Better Way Back. It’s a growing patient community for those faced with the decision to have spine surgery. We put those who have questions in contact with others who have undergone similar or identical procedures. Thanks!
The Better Way Back
Hi Matt – what sort of organization is this? From the website it appears to be a vendor / provider group. No problem with that of course – just need to be clear, and know what category to put it in.
Also, what’s the participatory medicine aspect of the service?
Here’s a patient community for people with crohn’s disease: http://crohnology.com/
CancerConnect.com is the best of both worlds. It offers comprehensive cancer information, organized by disease and stage. It is also a free social network for patients, survivors, and caregivers. Members can join one or more of the many “communities” offered.
Forum for patients that have or had preeclampsia or other hypertensive diseases in pregnancy. The website is informative and the forum (link below) is a great support and information network
http://preeclampsia.org/forum/
Hey,
There is a nice community regarding ‘Eye infections and diseases’ at Inspire.com. I have posted on it looking for answers to one of the condition I am encountering. It would be great if anyone could help in this.
Link: http://www.inspire.com/groups/eye-infections-and-diseases/discussion/hot-and-dry-eye/
Thank you,
WhatNext.com is a new online cancer support network developed with the participation of the American Cancer Society. WhatNext instantly connects people touch by cancer – based on a specific diagnosis – to peers and vetted resources that can help. We support patients, caregivers, survivors and loved ones.
At WhatNext, people are sharing the details of their cancer journeys as a way to help those who are newly diagnosed know what they might expect, what they might need and where they can get what they need.
Dave, I hope you’ll be able to list us. We would love for you to stop by and hopefully you’ll be able to share your incredible journey when you have some time. We’d love to hear your thoughts on how we’re doing!
Link: WhatNext.com
Thanks!
Karen
Thanks for having created this website, Dave!
The Amazon-L listserv is a community of women with breast cancer who have chosen NOT to do conventional treatment. For some, it’s a conscious choice, made after much research and soul-searching. Others, such as those with multiple chemical sensitivities, feel that it’s the only route available to them. Still others did standard treatment that failed them, so now they walk the alternative side of the medical street.
Our listserv exists primarily to support those using or wanting to use alternatives in order to heal. We do an enormous amount of research, mostly from alternative resources, but we also share conventional research related to a topic we’ve been discussing, or which surprise us. We discuss the research papers we find, seek other papers to corroborate or refute what we’ve found, and in some cases contact the researchers directly in our search to learn what might be useful against our disease. We share what our alternative practitioners have taught us, and support one another throughout.
We welcome those with breast cancer [and/or family members] who are interested in learning more about and/or following any of the
alternative protocols paths which have been successful against this
disease.
My own personal hope is that any woman who finds a lump in a breast
will join us before any kind of biopsy is done — that is, even before she knows if her lump is cancerous. That’s because all biopsies are not equal, and there are ways other than surgical to determine if a lump is cancerous or not.
Thanks again for being here, Dave!
Warmly,
Carole Berlin
Co-administrator of the Amazon-Alternatives Listserv
You can join by following the directions on our website
[www.amazon-alternatives.org] or by sending a message to the Listserv address
LISTSERV@LISTSERV.TECHNION.AC.IL
Leave the subject line blank
In the body of the message type SUBSCRIBE AMAZON-L Your Name
[using your first and last names in place of "Your Name"]
Hi, Dave
It’s been awhile since we spoke, but healthetreatment has gained terrific momentum in the past year, too.
Healthetreatment collects and displays self-reported health statistics and user-generated health content. Our mission is to help people around the world find new ways to feel better; to have a more productive conversation with their healthcare provider; and to have a better chance at an improved quality of life.
We’d be honored to be included in your list.
Thanks for the consideration.