Help Center
Have Questions?
You’ve come to the right place! Get answers to the most frequently asked questions about the inner workings of SpinalMuscularAtrophy.net, as well as the organization that powers it all – Health Union!
For technical support or any questions not listed below, please email us at contact@spinalmuscularatrophy.net. We’re here to help!
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.
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 owns and operates a wide range of patient communities and is always planning for future communities. Learn more about our current online communities here.
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.
Privacy
Does Health Union sell my information? Does Health Union sell my email address?
At Health Union, we take your privacy seriously. To learn how we collect, use, share, and process data, please see our Privacy Policy. To request that we delete your Personally Identifiable Information, please contact us at privacy@health-union.com or click here to download our request form that you may mail or fax us.
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.
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 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.