TOP QUESTIONS WE HEAR FROM OUR MEMBERS
What is VUS?
Variants of Uncertain Significance can possibly play a role in health conditions. We now connect members who are able to list their VUS gene expressions as a Quality on their Connect Contact Form! CLICK HERE FOR INFO
Will I only have a connection from my county or state?
No! Your potential match could be from anywhere! Since email will be the initial, or perhaps the only form of communication, geography is not a barrier.
How long does the process take?
Within 48 hours, your Connect Contact Form form will begin to be processed in our secure database. Upon completion of initial processing, at this time it typically takes 2-3 business days for potential matches to be identified. At that point, you and potential connections will both be given to each other's email addresses through an encrypted system. If at your initial submission your entries do not produce a connection, your qualities will remain in the system to be matched to new members as they enter the database. We will continue to match your future connections under the same qualifiers you have submitted.
What is your refund policy?
Once payment has been received, orders may be canceled only if the Connect Contact Form has not yet been processed. If you would like to try and cancel your order, submit a cancellation request in writing to firstname.lastname@example.org as soon as possible, and we will do what we can to process your request. If you would like to be removed from the S1LY database at any time at no cost to you, submit your request in writing to email@example.com. It is our hope to connect each of our members with another member who matches what they are looking for in someone else in regards to their specific health condition qualities; however, we can not guarantee results.
Who can sign up for Some 1 Like You?
Anyone 18 years of age or older who wants to communicate with someone who may have a similar health challenge as them. Parents or guardians can also search on behalf of their children to connect with another parent or guardian. Our members enjoy the ability to connect with other people who have the same symptoms or diseases without having to post their information online publicly. Whether it be a developmental delay or a rare syndrome or disease, no symptom is too small to find someone else living with the same health conditions as you are. Some 1 Like You is a great place for those with combinations of symptoms or rare conditions to find someone to connect with.
What if you don't find a connection for me immediately?
If at your initial inquiry a connection is not immediately made, we will continue to search for you. Your number of connections will ultimately be determined by how specific you are when you list the qualities (symptoms, challenges, diseases, etc.) you are looking to connect with someone else on. The more symptoms you provide, the greater the chance you will be matched.
How long will my membership last?
Memberships at Some 1 Like You will last for the lifetime of our organization. This means that as long as we continue to continue to connect humans via encrypted email, your membership will not expire.
Will you view my communications with my connections?
No! We are simply the matchmakers and are not the avenue in which you communicate. This is a confidential option to find Some 1 Like You. NO PROFILES OR POSTING REQUIRED! We do not sell health data nor monitor or track your communications.
Do Gifted Memberships expire?
Beginning in 2018, Gifted Membership codes are active for 60 days from initiation. This is done to ensure the opportunity for the membership to be redistributed to another individual to register as a S1LY member if it is not redeemed within two months. If you have any questions regarding the redemption of your Gifted Membership, please contact us at firstname.lastname@example.org anytime. Or, if you have a code from 2017 that is no longer active, please let us know and we are happy to reactivate it for you.
How much does it cost?
Lifetime Memberships are $50. If you decide to make a change to the qualities you listed in your data space, the cost is $25. There is no cost to members who received a Gifted Membership.
What is the difference between entering 1 OR 10 Qualities or 1-10 Quality Lists?
You have the ability to tell us if you want to be connected to someone who wants to talk about ANY of the individual Qualities you list; or, you can list your Qualities in groups to be connected with another person only if each Quality listed is a match. For example, If you would like to talk to anyone who has Diabetes, you would list that as one of your Qualities like this: 1-Diabetes. If you would like to only talk to someone who has Diabetes as well as Chronic Fatigue, Hypotonia and Anxiety, you would list it like this: 1-Diabetes, Chronic Fatigue, Hypotonia, Anxiety. Then, you will only be matched with someone who is also looking for the same list of Qualities. You may choose up to 10 Individual Qualities or 10 Lists of Qualities on your Connect Contact Form.
How do I Sponsor Someone?
Do you know someone who is experiencing a health challenge for themselves or their child? If you would like to help, give them the gift of connecting to someone who understands what they are going through. You can purchase them a Gifted Membership to Some 1 Like You! This is a Lifetime Membership to our Connection Database. Simply purchase a Gifted Membership on our Payments page, list their email address in the notes section, and we will do the rest! Additionally, for every S1LY membership sold, one is donated to someone fighting a rare disease.
How do I become a Distributor?
If you would like to sign up to be notified when Gifted Memberships are available to be distributed through an organization like yours, email now to apply to become a Distributor. If your organization qualifies, we will place you on our list to receive Gifted Memberships for your patients or guests should the opportunities arise.
What is a Gifted Membership?
Were you nominated for a Gifted Membership? If so, your friend may have purchased one for you, or a local hospital or sports organization may have received a number of Gifted Memberships to pass out to its members! This means your lifetime membership fee to S1LY has been covered and your secure data space is waiting for you. Please note, if your Gifted Membership was received as a part of a Rare Disease campaign, processing time frames are oftentimes extended depending on the volume of responses. Potential initial data analysis can take up to two weeks to be identified when volumes are high.
Is my information secure?
Your information is kept private & secure. We will never sell your data. The only data shared with another member is the email address you provide on your Connect Contact Form and each quality you both listed alike. While the information you share on this form may be similar to your own situation, it does not identify you or your child directly as we do not collect your name, date of birth or social security number. The following is how we will use and disclose your de-identified information: We will use your email address to connect you with other people who match the criteria listed of what they are also looking for in someone else, and all your communications are done between you and your match, not on our site. Our server is secure, and your payment information is safe & never stored. We will never share your email address without your permission. All matches are sent to our members via encrypted email for added security.
What is a Change Submission?
Once you have purchased your Initial Membership, those qualities will be used to match you with another member. Even after we establish your first connection and provide you with their email address(s), we will continue to look for any additional connections as new members enter the database. If you have had a change in diagnosis or symptoms, you can then choose to submit a Change Submission (aka Data Refreshment) if you would like. If you do, we will update your qualities in our system to match you with different members. Please note that anytime you submit a Change Submission the fee is $25 regardless if you add or delete 1 or 10 Qualities.