Linking Hearts
Introducing, Linking Hearts! A one-to-one matching program open to all Sisters by Heart adult patients and parents to enhance community, connection, and support
About:
As the Sisters by Heart family continues to grow and provide support to all those in the single ventricle community, we recognize the desire of many to have closer and more personal connections to people who share their experiences. Sisters by Heart is committed to supporting single-ventricle patients and families from diagnosis, through treatment, and beyond. We heard your feedback and are thrilled to introduce: Linking Hearts, an extension of Linked by Heart, to provide one-to-one connections and support.
Linking Hearts is a matching program that connects members of the Sisters by Heart Community based on shared characteristics and experiences. The program helps adult patients and families make personal connections with others who live in the same area or share the same single ventricle diagnosis, or are in a similar place along the single ventricle journey. The program is free to join and open to all parents and caregivers of single ventricle patients in the Sisters by Heart community, including angel moms and dads, as well as patients themselves, ages 18 and older.
How Does this Program Work?
Patients and families can register and sign up for Linking Hearts on our website. Once registered, we’ll ask you to provide some information about yourself and/or your single ventricle child and ask you to agree to our terms of engagement and privacy policy.
Once registered, we’ll match you with others based on four key details: your profile type (patient, parent, etc), age of you/your child, diagnosis, and geographic location. We’ll also provide you with a list of potential special interest areas that you can select, such as specific post-surgical complications, education, or mental health and resilience. The confidential and secure matching system will suggest matches based on the shared criteria, and you can choose who you would like to connect with -- it’s that easy!
Once you choose who you’d like to connect with, they will be notified to ask if it’s a good time to connect. If they say yes, we connect you together and then leave it up to you to decide how and when you’d like to connect. Phone, email, or text -- whatever works best for you and your match!
FAQs
Pre-program launch:
Q. Who can join Linking Hearts?
A. Linking Hearts is currently open to all parents and caregivers of single ventricle patients in the United States, including angel moms, dads, and caregivers. Linking Hearts is also currently available to patients ages 18 and older.
Q: How do I sign up to be a part of Linking Hearts?
A: We are currently recruiting Linking Heart members to build up our matching pool and ensure we can make the most helpful matches possible. In order to join the matching pool, you will need to register and create an account. To do this, you will need to create a username and password and tell us if you are a parent/caregiver, an angel parent/caregiver, or an adult patient. Then you will enter some information about yourself and/or your single ventricle patient, including: the patient’s age, diagnosis, and geographic location. These 4 criteria will be used to generate your matches. You will also have a list of topics that you can select as areas of special interest such as education, post-surgical outcomes, or mental health and resilience. You will also have the ability to upload a photo and write a short bio about yourself, your family, and what you’re looking to gain from this program, which will only be viewable to other members once you’ve accepted their match.
Q. How will I be matched with others
A. We want to ensure your matches are the most customized to you and your profile. This may take some time as we recruit more Linked by Heart members to join our program. Once you’ve completed registering your account and filling out your profile, we’ll notify you when we are ready to begin matching!
When you’ve been notified of your matches, log back into the site and you will see the names, photos, and profile information of your matches. You will be able to review these profiles and choose who you would like to connect with and you’ll click a “Connect” button. The program will then reach out to those individuals to ask if they would like to be connected. If they say yes, the program will notify you. You can come back to the matching page again at any time to search for new matches. You can also update your matching criteria and special interest areas at any time to update your matches.
Q: When will I be matched with others?
A: We want to make sure the matches suggested to you are a great fit for you! As we are ramping up the Linking Hearts program and building our pool of potential matches, we are going to hold off on making any connections until we have enough potential matches. We’ll be sure to notify you when you’ve been matched, and you’ll be able to let us know if it’s still a good time for you. We anticipate the recruitment process may take a few months and we appreciate your patience!
Q: What information is shared with my matches?
A: The matching algorithm connects Sisters by Heart members based on 4 shared criteria: profile type (parent/patient), patient’s age, patient’s diagnosis, and general geographic location. Because this information is used in the matching process, it will be visible to potential matches within the Linking Hearts community. Your matches will also be able to see the special areas of interest you have identified. You have the option to add additional details, such as a photo and short bio, but these will only become visible to other members once you’ve agreed to connect with them as a match.
Q: How often do I need to connect with my match?
A: This program can be flexible to your schedule and needs; it is entirely up to you and your match how often you communicate. We recommend new matches review our Linking Hearts Community Agreements together to set some general agreements around frequency of communication, communication method, response times, etc. We want to make sure you and your match are set up for successful communication from the start! But we also want this to work for you and your match -- and we leave it to you to figure out what that looks like!
Q: What topics should my match and I talk about?
A: Again, this is entirely up to you and your match! When reviewing the Linking Hearts Community Agreements, you and your match can share topics that you are interested in discussing and learning more about. All we ask is that you don’t provide any medical expertise or advice, because everyone’s single ventricle journey is unique. While medical topics and experiences will inevitably arise in conversations around single ventricle disorders, we ask you to refrain from providing any medical advice to your matches.
Q: What happens if my matches aren’t a great fit for me and my questions?
A: As our matching pool continues to grow, so will your ability to match with new Linking Heart members! You will have the ability to refresh your matching page to meet new matches. Additionally, you will have the ability to customize the matching criteria used to generate your matches. For example, you can choose to connect with matches who have similar matching criteria to you (same age of patient, diagnosis, and geographic location) or opt to match with other members based solely on diagnosis, or geographic location, etc.
Q: What is the cost to join?
A: This program is free to join.
Q: How secure is the matching program?
A: The matching program is provided on a secure site with our partner program, CNXION. Matches and profiles are protected by the password secure site.
Q: Who do I contact with my questions?
A: Please contact Sisters by Heart at info@sistersbyheart.org.
Post Program Launch Updates to FAQs:
Q. Who can join Linking Hearts?
A. Linking Hearts is currently open to all parents and caregivers of single ventricle patients in the United States, including angel moms, dads, and caregivers. Linking Hearts is also currently available to patients ages 18 and older.
Q: How do I sign up to be a part of Linking Hearts?
A: In order to join the matching pool, you will need to register and create an account. To do this, you will need to create a username and password and tell us if you are a parent/caregiver, an angel parent/caregiver, or an adult patient. Then you will enter some information about yourself and/or your single ventricle patient, including: the patient’s age, diagnosis, and geographic location. These 4 criteria will be used to generate your matches. You will also have a list of topics that you can select as areas of special interest such as education, post-surgical outcomes, or mental health and resilience. You will also have the ability to upload a photo and write a short bio about yourself, your family, and what you’re looking to gain from this program, which will only be viewable to other members once you’ve accepted their match.
Q. How will I be matched with others?
A. Once you’ve registered and selected your matching criteria, you will see the names, photos, and profile information of at least 3 matches. You will be able to review these profiles and choose who you would like to connect with and you’ll click a “Connect” button. The program will then reach out to those individuals to ask if they would like to be connected. If they say yes, the program will notify you. You can come back to the matching page again at any time to search for new matches. You can also update your matching criteria and special interest areas at any time to update your matches.