Heterotaxy Connection
Agreement with Scientific Advisory Board
This will unlock greater hope, stronger science, and a brighter future for heterotaxy.
Posted May 5, 2025
Background & Context
Heterotaxy Connection worked with doctors to create the Heterotaxy Research and Clinical Care Collaborative which includes doctors and other clinicians to further the study and care of heterotaxy. HC is a registered 501(c)3. HRC3 is loosely formed group with no formal structure as of yet.
Work & Deliverables
Create an agreement between the organization with feedback from each as to what we need from each other
Preparation Phase
- Intro calls to understand how the organizations function together
- create agreement
- edit as needed
Collaboration Phase
- receive feedback on draft
Wrap Up
- We need a formalized agreement that both organizations sign
Heterotaxy Connection
I founded Heterotaxy Connection in 2014 out of a desire to help those following behind us have a smoother road than we did. We started as primarily a patient support group but have evolved the last few years to incorporate working with medical professionals and have started the Heterotaxy Research and Clinical Care Collaborative (www.hrc3.org). Up until this year we have been entirely volunteer led with no formal background or training in non profit. We don't know what we don't know but realize we have a lot to learn. We are hosting a scientific and family conference in October. We have no formal agreement with HRC3. Right now they are acting as our scientific advisory board. We've talked about putting a formal agreement in place but have no idea where to start.
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Heterotaxy Connection
I founded Heterotaxy Connection in 2014 out of a desire to help those following behind us have a smoother road than we did. We started as primarily a patient support group but have evolved the last few years to incorporate working with medical professionals and have started the Heterotaxy Research and Clinical Care Collaborative (www.hrc3.org). Up until this year we have been entirely volunteer led with no formal background or training in non profit. We don't know what we don't know but realize we have a lot to learn. We are hosting a scientific and family conference in October. We have no formal agreement with HRC3. Right now they are acting as our scientific advisory board. We've talked about putting a formal agreement in place but have no idea where to start.