Through its virtual platform, the onevoice community platform https://www.oneedsvoice.com provides the groundwork for collaboration among all members of this rare disease community. At rareLife solutions (the creator of onevoice), we believe that sharing and learning from each other’s experiences with rare disease empowers patients, caregivers, advocates, researchers, healthcare professionals, and industry partners to better manage, treat and educate about rare diseases and the lifestyles surrounding them. After all, the first step towards progress begins by starting the conversation (especially when what you’re talking about is rare and something not everyone has heard about)!
We understand that what you share about yourself and your rare disease is important and deserves respect. Just as you’re working with the patients, caregivers, advocates, community managers and other members on the onevoice platform to advance the rare disease experience, we’re working with you to do the same! As collaborators in this shared mission, we want to be completely open with you about how we’re amplifying your voice and the resources in the community using the onevoice platform to improve the rare disease ecosystem.
What is a onevoice platform?
A onevoice platform provides a forum for knowledge and community growth for all members within a rare disease ecosystem by curating links to high quality disease resources in one space and providing a virtual place to connect. Our platforms are currently dedicated to oneSCDvoice.com, a Sickle Cell Disease community; DuchenneXchange.org, a Duchenne Muscular Dysthropy community; oneAMYLOIDOSISvoice.com, an Amyloidosis Disease community; and oneFAPvoice.com, a Familial Adenomatous Polyposis community.
Is joining a onevoice community free?
Yep, we do not have a membership fee.
How old do I need to be to use a onevoice platform?
You must be at least 16 years old.
Why do I need to register?
While the use of our library of resources, such as rareCurate, doesn’t require registration, the full use of the site’s features does. Having a member account allows you to customize your onevoice experience and allows you to participate in rareCourage conversations, which are only viewable by members.
Do you need my real name?
Nope- you don’t have to share your real name unless you’d like to.
What member information is visible to other community members?
Your username, role, profile page, and rareCourage posts are the only things automatically visible to logged in members. You can choose whether to display other information in your profile.
Do you track my IP address?
Your IP address is one of the pieces of data sent by your web browser to our partner, Google Analytics. You can read Google’s policies here (https://www.google.com/policies/privacy/partners/).
Do you collect information about members?
We do collect certain information about members which we use with the intention of improving the understanding and treatments for the rare disease and its community.
What types of information do you collect from members?
We only collect information that a community member voluntarily provides. Examples include biographical information (age, gender, city), photos, and disease info (symptoms, treatment, etc.).
Will you share or make my information public?
As we strive to use our platform to advance this disease ecosystem, we do share certain anonymous information collected with collaborators, people working to enhance onevoice, and most importantly, you and your disease community.
What type of member information is not shared or made public?
Except for some very important exceptions, we will not share a member’s name, password, email address, or mailing address as input during registration. Additionally, we won’t share your date of birth in your profile or your private messages.
How is the member information you collect shared?
Other than reporting adverse events, we do not share the information we collect as an individual data point; it is combined with the same type of information from other community members (in other words, we aggregate the data and strip out information that could be used to identify an individual). Occasionally, we may share anonymized excerpts about the onevoice platform as testimonials or other ways.
How is my email address supplied during registration used?
Simply to stay in contact with you about happenings on the platform, opportunities in your disease space, and any questions or requests you have. You can modify your email preferences in mySettings.
We may also need to get in touch with you in the event of an emergency or to follow up if you mention an adverse event.
Are there any safeguards to ensure that the conversation within onevoice stays on topic?
We provide trained Community Managers for all onevoice platforms who ensure that rareCourage remains a safe, helpful, and welcoming space.
How safe are you against hacking?
We use HIPAA and HI-TECH certified layers of security to protect you and your postings against hackers seeking information you’ve chosen to remain private (although, please understand, anyone can register and see whatever you’ve chosen to show to the community).
How do you select information resources?
Our research team is guided by our councils of expert physicians, healthcare professionals, advocates, patients and caregivers who represent a wide-variety of perspectives, geographies and personal and professional experiences to inform us as to information resources that are valuable to the community. By selecting a diverse set of experts, we also minimize bias from any particular perspective, institution or experience.
If you have any questions or concerns related to the information practices of this platform, please send us an e-mail at firstname.lastname@example.org, or write to or call us at the address/phone numbers below.
Last Updated: September 12, 2019
rareLife solutions, inc.
53 Water St, 2nd Floor
South Norwalk, CT 06854
© 2019 rareLife solutions, inc. All rights reserved.