Got Questions? Need help?
You've come to the right place! Get answers to the most frequently asked questions about the inner workings of SpinalMuscularAtrophy.net (such as technical help, content, and moderation policies), as well as the organization that powers it all - Health Union! And remember, if you’d like personal assistance, we are just a few clicks away! Who’s this “we”? Why, it’s the community team here at Health Union! We LOVE our communities, and that means we want to help you as much as we possibly can! Feel free to drop us a line after reviewing these topics for your question!
Background Information & Logistics
What is Health Union?
In 2010, two former pharmaceutical marketing executives left their corporate jobs to establish Health Union, LLC in an effort to truly help people improve their health. Our founders understood the untapped potential to leverage technology in ways that would enable patients to learn, to connect, to share and to be heard in a much bigger way.
Health Union is a fast-paced, forward thinking company. Our goal is to harness the full power of the Internet and emerging technology to inspire people to live better with challenging health conditions. Our unique approach combines new daily, original content with digital, social and mobile technologies to cultivate some of the most active, engaged and fast-growing online communities in migraine, multiple sclerosis, rheumatoid arthritis, type 2 diabetes, hepatitis C, COPD.net, asthma, irritable bowel syndrome, psoriatic arthritis, lung cancer, and more.
Our desire to help people motivates us, and we continuously push ourselves to meet the needs of our ever-growing communities in new and interesting ways. More than a digital publisher, we build real relationships with people and develop deep expertise in the markets we serve. Read more about What We Do.
What websites does Health Union own/operate?
Today, Health Union’s portfolio of patient communities includes Migraine.com, MultipleSclerosis.net, RheumatoidArthritis.net, Type2Diabetes.com, HepatitisC.net, COPD.net, Asthma.net, IrritableBowelSyndrome.net, PlaquePsoriasis.com, Psoriatic-Arthritis.com, LungCancer.net, ParkinsonsDisease.net, SkinCancer.net, AtopicDermatitis.net, BladderCancer.net, ProstateCancer.net, InflammatoryBowelDisease.net, Blood-Cancer.com, Endometriosis.net, AdvancedBreastCancer.net, MacularDegeneration.net, AnkylosingSpondylitis.net, AlzheimersDisease.net, Cystic-Fibrosis.com, H-I-V.net, Heart-Failure.net, Lupus.net, AxialSpondyloarthritis.net, Sleep-Disorders.net, and HSDisease.com.
Learn more about Our Communities.
How does Health Union make money?
Health Union enables companies to connect, interact and engage with our patient communities through paid relationships for media, market research, and clinical trial services. There are advertisements on our websites, and our site visitors, members or social media followers may receive emails, survey invitations, clinical trial announcements and other program opportunities from sponsors and partners. We strive to be open and honest with our communities regarding any advertising, corporate partnerships and sponsor relationships. We will always clearly disclose these relationships within the context of those communications.
At Health Union, we always approach our partner relationships with a desire to educate partners about real patient experiences and create value or meet the needs of our communities. Our goal is to develop innovative, win-win solutions that benefit both patients and partners, ultimately improving health and healthcare for people living with the conditions we serve.
Does Health Union sell my information? Does Health Union sell my email address?
At Health Union, we take your privacy seriously. Health Union will NEVER share or sell any personally identifiable information (including email addresses) of any community member or individual participant to a sponsor or partner without specific permission to do so.
Health Union does not collect personally identifiable information – such as name, address, birthdate, email address – from any community member or individual participant unless they have voluntarily provided it to us. And, it is not mandatory to provide personally identifiable information to use or visit any Health Union website. Read more about our privacy policies to understand the information we may collect or gather when you use and visit our websites.
Why am I receiving emails from advertisers?
Health Union may periodically send emails directly to our members on behalf of a sponsor or partner. These emails will be clearly marked as “sponsored content” and sent from a dedicated “Sponsor@websitename.com” email address. Please note, we do NOT share email addresses (or any other personally identifiable information) with sponsors; we simply send an email to our members on their behalf, as part of a paid partnership program. We strive to be open and honest with our communities regarding advertising, corporate partnerships and sponsor relationships. We will always clearly disclose these relationships in our communications.
All Health Union emails, including sponsored emails, are fully compliant with anti-SPAM rules, and you may opt-out of receiving emails from us (and our partners) at any time. To stop receiving emails, simply click “unsubscribe” at the bottom of any newsletter or other email from a Health Union website.
I received an invitation to participate in a survey via email. What is it? How will the data be used?
Health Union offers a variety of opportunities to participate in surveys and research opportunities to our community members, including paid market research studies, which seek valuable input from people living with specific conditions.
Invitations to participate in Health Union’s annual In America surveys are extended broadly to all our audiences across our websites and social media pages (not just registered community members). In America surveys are intended to quantify the true impact of these conditions among patients and their loves ones – going beyond basic demographics and symptoms to establish deep understanding of the holistic patient journey for those affected and tracking trends over time. Participation is completely voluntary, and respondents are not compensated for participating in these surveys. All responses to In America surveys become the property of Health Union, LLC; data will only be presented in aggregate (meaning in groups). Top-line results are published on Health Union websites and used to inform the development of new articles throughout the year.
Health Union also may conduct direct market research surveys on behalf of sponsors and offer our community members the opportunity to share their experiences, opinions and feedback with the companies involved in their healthcare. These research surveys are by invitation only (usually sent via email to registered community members) and clearly marked as sponsored. Participation in any market research survey is completely optional, and respondents who qualify are compensated for their time. Please note, individual privacy is very important to us at Health Union, and we never share the identity of any individual participant or community member with sponsors of market research projects.
How did Health Union get my email address?
We take our members' privacy very seriously. The only way we obtain email addresses is when a person either registers, signs up for a newsletter, or takes a survey and provides their email address. We don’t obtain email addresses from Facebook or any other third party sites.
Content and Community
Is Health Union content medically accurate? How often is content updated?
We strive to provide the most accurate and up to date information on all of our websites. All of our published content follows the guidelines of the Health On The Net foundation. Health Union writers utilize the most recent references in each condition and ensure reference information is easily accessible at the bottom of each article. Additionally, we regularly monitor ongoing medical research and drug development and update our websites accordingly.
If you notice any errors or have suggestions for how we could improve our content, please don’t hesitate to let us know at contact@SpinalMuscularAtrophy.net.
How does Health Union protect the privacy and safety of its community members?
It is our goal to create the best and largest online communities of experts and patients dedicated to specific health conditions. We encourage open conversation within Health Union platforms. We realize that discussions around healthcare can be sensitive and sometimes emotional. It is ok if not everyone agrees on a topic, but we must ensure all conversations are respectful and non-threatening. Each Health Union platform has a terrific group of moderators – patient advocates, Health Union staff, and other experts – who constantly monitor conversations occurring on our Facebook pages, in our forums, and within the comments of specific articles. They respond to questions, offer resources, address concerns and otherwise make sure people feel welcome, appreciated and safe. Our moderators also watch for violations of our Community Rules, which prohibit profanity, medical advice, solicitation of any kind, and the sale of any products (ever). Health Union moderators have discretion to edit or delete posts that do not comply with these discussion rules, and while we understand that everyone can have a bad day, individuals who violate the rules may have their posting privileges revoked without warning.
If you ever have a concern about conversations occurring in one of our communities, please email us at contact@SpinalMuscularAtrophy.net. We are here for you!
Does Health Union ever delete or edit comments posted by members?
We encourage open conversation within our platforms – it is our goal to create the best and largest online communities of experts and patients dedicated to specific health conditions. In rare cases, and according to our posted Community Rules, Health Union reserves the right to delete or edit comments when they violate our policies.
Do you have a list of recommended doctors or healthcare institutions? Do you provide crisis counseling? I’m experiencing a new/severe symptom or a reaction to my medication. Can you help?
For your safety, we do not provide personal medical advice via the internet. You are welcome to ask for community feedback on personal experience from other members, as well as our moderators and contributors. However, none of this should take the place of consulting your doctor, nor can it be considered personal medical advice. If you are experiencing new or more severe symptoms, we encourage you to speak with your doctor as soon as possible.
I’m interested in joining Health Union as a patient advocate contributor or moderator. How can I be considered? How do you select contributors for the websites? How do you select moderators?
To be considered as a contributor, please email contact@SpinalMuscularAtrophy.net with examples of current work – either with links to published content or with attachments. We select contributors who help us provide a diverse view into living with a particular condition; those who have excellent written communication skills; people who can work as part of a team; and of course, whether or not we are looking to expand our network of contributors at that time plays a role in the selection process.
Regarding selection of moderators, we choose people who are knowledgeable in a particular condition, either based on extensive personal experience or professional training. Note that we do not provide personal medical advice for individual community members and always recommend consulting with healthcare professional. Interested? Send an email to contact@SpinalMuscularAtrophy.net.
I found an error on one of your websites. Who do I contact?
Well, that is somewhat embarrassing, isn’t it! Thank you for your input and letting us know. Please email us with a screenshot and/or link to the page where an error occurred at contact@SpinalMuscularAtrophy.net. We will get it fixed as soon as possible!
Why should I register on a Health Union website? How do I sign-up?
Registering on a Health Union website allows you to participate on the sites in ways that our community members often find enriching. For example, as a registered member, you can comment on articles, share your story on our Stories pages, submit questions or comments in the discussion forums, start your own thread in the discussion forums, and more. In addition, with your membership to any Health Union website you'll receive:
- The weekly e-Newsletter: All the latest articles published from the website, right in your inbox, once each week.
- Surveys and research opportunities: Learn about opportunities to participate in condition-related research, including paid market research studies which seek valuable input from people living with specific conditions.
- TrialLink notifications: Learn about and register for cutting edge clinical trials performed by organizations conducting research on new treatments for specific conditions.
Registering for one of our websites is easy. Click “Register” at the top of the page (below the website logo and menu) or one of the widgets in the right-side column. Simply provide your email address to receive the full benefits of SpinalMuscularAtrophy.net membership, including the latest news, research and clinical trials opportunities. You’ll receive an email to set a password and activate your account – then you’re all set!
- Creating an Account
- Forgot Password
- Change Password
- Change Email Address
- Manage Email Preferences
- Logging Out
- Using Q&A Tool
- Submitting a Story
- Using Forums
- Profile Questions, Photos, and Privacy Settings
- Friend Finder and Member Search Tools
- Friend Requests
- Private Messages
Trouble creating an account or logging into an existing account?
To become a member of SpinalMuscularAtrophy.net, select the “Register Now” button on the top banner of any page. If you’re having trouble registering for the first time or just need some personal assistance, please send an email to contact@SpinalMuscularAtrophy.net. We are happy to help!
Having trouble logging in? First, please make sure you are using the correct email, username, and password. Once you’ve successfully logged in, a post update bar with the message “How are you today?” will appear on the home page.
- Click “Lost your password?” below the login boxes.
- Enter your username or the email address you used to signed up.
- Click “Set new password.” You will receive an email containing a link to reset your password.
- Once you click the reset link in the email, it will bring you to a screen with an auto-generated password. You can either use that or type over that password with one of your choosing. Click “Set password” when finished.
You can change your password at any time. You must be logged in to change your password.
- Click “Profile” in the navigation bar.
- Click “Settings.”
- Enter your new password and select “Save Changes.”
Still having trouble? We’re here to help! For personal assistance, please email us at contact@SpinalMuscularAtrophy.net.
Email help – Change your email address, update communication settings, or unsubscribe
- After logging in, select “Profile” in the navigation bar.
- Select “Settings” in the right side menu.
- Scroll down and enter your new email in the “Account Email” box.
- Click the blue “Save Changes” button.
To manage or update the emails you receive from the community:
- After logging in, select “Profile” in the navigation bar.
- Select “Settings” in the right side menu.
- Scroll down and select “Email.”
- Choose which email notifications you which to receive.
- Click the blue “Save Changes” button.
Want to log out of your account?
To log out of your account, simply click on “Log Out” in the navigation bar.
You can submit a question on SpinalMuscularAtrophy.net and get answers from SpinalMuscularAtrophy.net contributors, moderators, and other members of the community. You must be logged in to ask a question. To ask a question, select “Q&A” in the blue navigation bar:
- Click on the blue "Ask a Question” button.
- A text box will appear. Enter the title or topic of your question and add more details and context to your question in the message body.
- When you are finished, click the “Submit your Question” button.
- You will receive an email confirmation once your question has been approved for publication.
Prior to asking a question, you may want to see if it’s already been asked and answered by the community. To search for previously asked questions and answers:
- Select “Q&A” in the blue navigation bar.
- Begin typing your question in the “Previous Questions and Answers” box that is below the “Ask a Question” box. Any similar questions will appear.
Stories - How can I submit my story?
Sharing your story is a great way to connect with other community members and to help spread awareness about hepatitis C. To submit your story, you must be a registered member and logged into the community.
- Select “Stories” in the blue navigation bar.
- Choose “Click Here to Submit Your Own Story.”
- A text box will appear on the page. This is where you can add a title and write your story.
- Once you’re finished adding a title and your story, be sure to click “Submit.”
Once your story is submitted you’ll receive a confirmation message that says “Your story has been successfully submitted for review. You will receive an email once it has been published.” Please allow up to 48 hours for your story to be reviewed.
Forums - How do I post in the forums?
To post in the forums, you must be a registered member and logged into the community.
- Once you are logged in, select “Forums” in the blue navigation bar.
- You may either begin a new topic or reply to a topic that is already being discussed.
- For new topics, select which forum board you would like your discussion to be posted in.
- Scroll down to the bottom of the screen and you will see a text box. Enter the title of your message in the “Topic Title” field and add more context to your message below.
- To receive email notifications when someone replies to your forum post, select the “Notify me of follow-up replies via email” box prior to clicking the “Submit” button.
- To reply to an existing forum topic, click on the topic title and select “reply” in the message. A text box will appear for you to write your reply. To receive email notifications when someone replies to you, select the “Notify me of follow-up replies via email” box prior to clicking the blue “Submit” button.
If you need your forum post edited or deleted, please contact us at contact@SpinalMuscularAtrophy.net.
Profile Questions - Why should I answer the profile questions?
Your Profile is a great way to tell other community members a little bit about yourself. You can answer as many or as few questions as you like! The questions answered in your profile are also utilized in the Friend Finder and Member Search tools. These tools help you connect with other members who have the same symptoms, treatments, and more!
If there is anything additional you would like to see included as an option in the questions, please contact us at contact@SpinalMuscularAtrophy.net.
Privacy Settings - Who can see my profile?
You control what information you post and whether it is visible to “Everyone,” your “Friends,” “All Logged in Members” or only you, Whatever your choice, please do not post any confidential information, or anything you don't want others to see.
The default settings allow all logged in members to see your profile fields, with the exception of your zip code (your zip code is hidden and is never visible to anyone).
To personalize your privacy settings:
- Select “Profile” from the blue navigation bar.
- You can set your privacy settings for each profile field by clicking the “Change” button.
- You can set each profile field visibility to one of the following: everyone (both logged in and logged out users), only me, my friends, or all logged in members.
You can personalize your profile by adding a profile image and cover image. To add or change your profile/cover image:
- Log in and click “Profile” in the navigation bar.
- Scroll down to find “Change Profile Photo” or “Change Cover Image.”
- Click “Select Your File” and upload an image of your choosing.
- Use the box to adjust your image and click the “Crop Image” button when you’re done.
Friend Finder/Member Search
The Friend Finder and Member Search tools help you connect with other members who are just like you! Use the Friend Finder to find other SpinalMuscularAtrophy.net members with similar symptoms, treatment regimens, and more. To get the most out of this feature, we recommend that you answer as many of the questions in the Profile section possible.
To find a friend:
- Log in and click “Community” in the navigation bar.
- Select “Member Search” from the menu and click the “Try Friend Finder” button.
- After you’ve selected your search criteria, scroll down and click the “Search” button.
To search members by name or keyword (such as a symptom or treatment), enter your search criteria in the Member Search box.
When another member requests you as a friend, you can either accept or reject the request. If you no longer wish to be friends with a member, you can “unfriend” the member.
To accept, reject, or cancel a friend request:
- Log in and visit your profile by clicking on “Profile” in the navigation bar.
- Select “Friends” from the menu.
- Select “Friendships” to view and/or end a friendship
- Select “Requests” to accept or reject a friend request.
Received a friend request that you’re concerned about? Let us know by contacting us at contact@SpinalMuscularAtrophy.net.
The private message feature is an easy way to send personal messages to other members. Please note that the private message features may not be used for solicitation and cannot include nudity or otherwise explicit content.
To manage your private messages, log in and click “Messages” in the navigation bar.
If you receive a new message from a member you haven’t communicated with previously, you can choose to either show the message or delete the message.
If you want to send a message to a member, choose “Compose.” Fill out the member’s username, add a subject line, and compose the message. Be sure to click “Send Message” to send your private message to another member.
If you ever receive a message that you’re concerned about, please contact us at contact@SpinalMuscularAtrophy.net.
Didn’t find what you were looking for? Send us a message at contact@SpinalMuscularAtrophy.net - We are happy to help!