Who can join Linking Hearts?

Linking Hearts is currently open to:

1. all parents and caregivers of single ventricle patients in the United States, including bereaved moms, dads, and caregivers.

2. individuals with a single ventricle heart defect, ages 18 and older.
   

How do I sign up to be a part of Linking Hearts?

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.

How will I be matched with others?

We want to ensure your matches are the most customized to you and your profile. This may take some time as we recruit more patients and families from Sisters by Heart to join our program. 

Please feel free to go back to the site and update your matches at any time. Once you have reviewed the profiles of those whom you match based on the criteria you have entered, you will then 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, and then you and your match can connect however you would like (phone, text, email. Etc.). 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.

When will I be matched with others?

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!

What information is shared with my matches?

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.

How often do I need to connect with my match?

This program can be flexible to your schedule and needs; it is entirely up to you and your match how often you communicate. We want this to work for you and your match -- and we leave it to you to figure out what that looks like!

What topics should my match and I talk about?

Again, this is entirely up to you and your match!  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. 

What happens if my matches aren’t a great fit for me?

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. 

What is the cost to join?

This program is free to join.

How secure is the matching program?

The matching program is provided on a secure site with our partner program, CNXION. Matches and profiles are protected by the password secure site.

Who do I contact with my questions or concerns?

Please contact Sisters by Heart at info@sistersbyheart.org.