CHD CONNECTS HEARTS
GENOME OF VALUES & PRINCIPLES OF ADAPTATIONS
We Have Two Sets of
GENOMES OF VALUES AND PRINCIPLES OF ADAPTATIONS
That Are The Core Foundation of CHD Connects Hearts
Members
Affiliates
MEMBERS SECTION
MEMBERS
The Genome of Values – The DNA of CHD Collaboration
These six pillars define how CHD Connects Hearts and its Members drive meaningful change:
1. Empowerment
Every patient, caregiver, and family member should feel seen, heard, and capable of driving change in their own journey and the larger CHD community. Access to transparent, trustworthy information and partnerships ensures that every member can make informed decisions about their care, advocacy, and role within the CHD movement.
Knowledge is power—when members are equipped with the right tools and resources, they gain confidence in managing CHD and influencing change.Empowerment fosters resilience, ensuring that every individual, regardless of where they are in their CHD journey, has the strength and support to move forward.
What This Means for Members:
✓ Members are given the tools, knowledge, and confidence to advocate for themselves, their families, and the CHD community.
✓ Caregivers and family members are supported in becoming advocates for their loved ones , ensuring they feel confident navigating medical, emotional, and systemic challenges.
✓ CHD teens and young adults are equipped with self-advocacy skills as they transition into adulthood.
✓ Members have direct access to CHD organizations, researchers, and professionals, ensuring open dialogue, clear communication, and trust in the partnerships within the Centralized Hub.
✓ Affiliates and researchers are encouraged to share their work transparently, so families understand how their participation, donations, and advocacy contribute to real change.
✓ Members can make informed decisions about the organizations, research, and advocacy efforts they choose to engage with, knowing that CHD Connects Hearts prioritizes ethical partnerships and full visibility into affiliate activities.
2. Collaboration
True progress in CHD care, advocacy, and research happens when patients, caregivers, families, and professionals work together. A unified, connected CHD community is stronger, more informed, and more capable of driving lasting change .Every member has a role in shaping the future of CHD, and collaboration ensures that no one has to navigate this journey alone. By sharing experiences, lifting each other up, and working toward a shared mission, we break down barriers and create a stronger future for all impacted by CHD.
What This Means for Members:
✓Every voice matters—members are encouraged to share their experiences, support one another, and contribute to the larger movement.
✓Families, caregivers, and patients work together with CHD affiliates, researchers, and medical professionals, ensuring that real-life experiences shape advocacy, research, and policy efforts.
✓Through mentorship, shared knowledge, and community-driven efforts, members strengthen one another
and build a movement that is bigger than any one person or organization.
✓Advocacy, research, and awareness efforts are most powerful when unified —together, members amplify their voices, demand change, and shape the future of CHD care.
3. Innovation
Progress in CHD care, advocacy, and support requires a commitment to new ideas, continuous learning, and forward-thinking solutions. An innovative mindset empowers members to seek better outcomes, challenge outdated approaches, and embrace change that improves the quality of life for all impacted by CHD.
Every CHD warrior, caregiver, and family should have access to advancements in resources, research, technology, and advocacy that can shape their future.
Innovation is not just about medical breakthroughs—it includes rethinking how we provide support, collaborate, and amplify the voices of those living with CHD.
A culture of innovation ensures that members are not just passive recipients of care but active participants in shaping the evolution of CHD awareness, treatment, and advocacy.
What This Means for Members:
✓ Members are encouraged to seek out new approaches to care, support, and advocacy, helping to drive progress in the CHD community.
✓ Families, caregivers, and patients have access to the latest advancements in resources, research, treatment options, and lifelong CHD care strategies.
✓ CHD Connects Hearts fosters a community of forward-thinking individuals who embrace progress and push for meaningful change.
✓ Members contribute to the future of CHD care by sharing their experiences, participating in research, and advocating for policy improvements that benefit the entire CHD community.
Resources are provided to support members in staying informed and engaged, including:
✓Educational materials on emerging treatments and lifelong CHD management.
✓Opportunities to connect with experts, researchers, and advocacy leaders.
✓Training on how to drive change through research participation, storytelling, and policy efforts.
4. Inclusion
Every CHD journey is unique, and every patient, caregiver, and family deserves to feel valued, respected, and represented within the community.
A truly strong CHD movement ensures that all voices—regardless of age, background, diagnosis, or life experience—are heard and embraced.Inclusion means breaking down barriers to support, ensuring that no one faces CHD alone due to lack of access, resources, or community connection.
A diverse and welcoming CHD community fosters deeper understanding, greater collaboration, and more impactful advocacy.
Every member should feel safe in sharing their experiences, seeking help, and contributing to the larger CHD movement without fear of judgment or exclusion.
Freedom of choice is essential—every CHD warrior, caregiver, and family has the right to engage in the way that best fits their journey, without pressure or expectation.
What This Means for Members:
✓ Members are welcomed into a diverse and inclusive community that values their experiences, perspectives, and contributions.
✓ Every CHD warrior, caregiver, and family has a place to connect, learn, and engage, no matter their age, diagnosis, or background.
✓ CHD Connects Hearts fosters an environment where differences are embraced as strengths, ensuring that all members feel supported and empowered.
✓ Inclusion ensures that resources, advocacy efforts, and opportunities for connection are accessible to all members, regardless of location, financial status, or personal circumstances.
✓ Members have the freedom to choose their level of engagement —whether they seek support, mentorship, advocacy, or simply a space to connect with others.
✓ Members are encouraged to uplift and support one another, ensuring that everyone has an equal voice in shaping the future of CHD awareness, research, and policy change.
5. Integrity
Trust is the foundation of a strong and united CHD community—every action, decision, and partnership must prioritize the well-being of patients, families, and caregivers.Integrity means doing what is right, even when it is difficult.
Transparency, honesty, and accountability must guide every effort within CHD Connects Hearts.
The CHD community deserves ethical leadership, responsible advocacy, and partnerships that align with the best interests of those affected by CHD.
Every voice should be heard, every concern should be addressed, and every commitment should be upheld—ensuring that CHD Connects Hearts remains a trusted space for all.
Integrity means advocating for real change, not just awareness. It requires a commitment to action that leads to meaningful improvements in CHD care, research, and policy.
What This Means for Members:
✓ Members can trust that CHD Connects Hearts operates with transparency in its services, partnerships, and community involvement while ensuring that all engagements align with the needs of CHD families.
✓ CHD Connects Hearts is committed to honest communication, responsible decision-making, and ensuring that all efforts serve the best interests of CHD families.
✓ Integrity ensures that all collaborations, services, and initiatives are structured to bring value to the CHD community
while maintaining a sustainable model that supports long-term impact.
✓ Members can expect clarity and openness in how CHD Connects Hearts functions, ensuring that their voices, needs, and concerns remain at the forefront.
✓ Advocacy efforts and research collaborations must be honest, ethical, and centered on real-world impact—integrity means that progress is measured by action, not just promises.
6. Education & Awareness
Knowledge is power—every CHD patient, caregiver, and family deserves access to clear, accurate, and up-to-date information about CHD care, research, and advocacy.
Raising awareness is more than just sharing statistics—it’s about educating, inspiring action, and ensuring that CHD is recognized as a critical health priority.
An informed community is an empowered community—education gives members the confidence to navigate their CHD journey, advocate for better care, and contribute to lasting change.
Awareness efforts must be meaningful and impactful, leading to increased research funding, policy improvements, and better healthcare solutions for those affected by CHD.
Every member has the ability to educate and spread awareness, whether by sharing their personal experiences, engaging in advocacy, or supporting initiatives that push for real progress.
What This Means for Members:
✓ Members have access to trusted, evidence-based information on CHD care, treatments, research, and lifelong management.
✓ Families, caregivers, and patients are equipped with the knowledge they need to confidently advocate for themselves and others in medical, educational, and policy settings.
✓ CHD Connects Hearts prioritizes raising awareness that leads to action , ensuring that every campaign, initiative, and discussion contributes to meaningful change in research, funding, and healthcare policies.
✓ Education is accessible to all members , ensuring that individuals from all backgrounds, levels of experience, and stages of the CHD journey can understand and apply the information they receive.
✓ Members play an active role in spreading awareness and educating others —whether within their communities, in advocacy efforts, or by engaging with CHD-focused organizations and professionals.
Member Principles of Adaptation – How CHD Connects Hearts Grows With You
These principles ensure that patients, caregivers, and families can engage in ways that align with their personal journey, while remaining part of a unified, evolving community that provides ongoing support, education, and advocacy opportunities.
1. A Go As You Grow Model That Evolves With You
Every CHD journey is unique, and each member’s needs change over time.
The support, education, and advocacy opportunities available within CHD Connects Hearts must adapt to meet members where they are—whether they are newly diagnosed, transitioning into adulthood, or navigating long-term care.
Members should have the freedom to engage at their own pace.
There is no expectation for constant participation; instead, the Centralized Hub provides a space that is available when needed, with resources that remain relevant and accessible at all times.
Growth happens in different ways for different people.
Whether a member is seeking emotional support, mentorship, medical information, or advocacy involvement, CHD Connects Hearts ensures they have a pathway forward.
Adaptation in Action:
✓ Members can access tailored groups, channels, and discussions specific to their stage in the CHD journey—ensuring that the support they receive is always relevant.
✓ The Go As You Grow model allows for flexible engagement —members can join, step back, or re-engage
whenever it fits their needs.
✓ CHD Connects Hearts through Affiliate connections continuously updates and expands educational materials, research connections, and advocacy opportunities , ensuring that members always have the most up-to-date resources.
✓ Members can transition from receiving support to becoming mentors or advocates , fostering a cycle of empowerment and knowledge-sharing.
2. Personalized Support & Connection
Every CHD journey is different, and meaningful support must be tailored to individual needs.
A one-size-fits-all approach does not work—each member should have access to personalized resources, discussions, and connections that fit their specific circumstances.
Support is not just about receiving—it’s about building relationships and finding strength in shared experiences.
Members should have opportunities to connect with those who truly understand their journey, whether it’s through peer mentorship, caregiver networks, or condition-specific discussions.
Community-driven support empowers members to grow, heal, and find their place in the CHD movement.
Whether members are looking for emotional support, practical guidance, or ways to give back, CHD Connects Hearts adapts to ensure they always have a place to turn.
Adaptation in Action:
✓ Members can search for and connect with others based on shared experiences, location, diagnosis, or personal interests—ensuring that their support network is truly relevant to their needs.
✓Discussion channels, groups, and mentorship opportunities allow members to engage in a way that feels right for them, without pressure or expectation.
✓ The Centralized Hub continuously evolves to provide new resources, peer connections, and community discussions
that address emerging concerns and changing needs.
✓Support is dynamic, not static —as members transition through different stages of their CHD journey, they can easily shift into new spaces that provide the right connections at the right time.
3. Flexibility in Engagement & Advocacy
Every member’s role in the CHD community is unique.
Some will seek emotional support, others will focus on education, and many will step into advocacy or mentorship roles.
CHD Connects Hearts ensures that each member has the freedom to engage in the way that best fits their journey.
Advocacy takes many forms, and every contribution matters.
Whether a member chooses to share their story, participate in awareness campaigns, engage in policy efforts, or simply support others in the community, their role is valued.
Members should never feel pressured to engage in a way that doesn’t align with their personal needs or comfort level.
CHD Connects Hearts provides multiple pathways for participation, allowing each individual to decide how and when they want to be involved.
Adaptation in Action:
✓ Members can choose their level of engagement, whether that means receiving support, mentoring others, sharing their experiences, or actively participating in advocacy efforts.
✓Opportunities for involvement are diverse and flexible —from quiet participation in online discussions to leading awareness initiatives or engaging in legislative advocacy.
✓CHD Connects Hearts adapts to the different ways members engage , ensuring that advocacy and education efforts are inclusive and accessible to all.
✓The Centralized Hub continuously evolves to provide new ways for members to participate, ensuring that no one is left behind as the CHD movement grows.
4. Access to Trusted Information & Resources
CHD patients, caregivers, and families deserve reliable, evidence-based information to make informed decisions about their health, advocacy, and future.
Access to clear, accurate, and up-to-date resources is essential for navigating the CHD journey with confidence.
Education should be accessible to all, regardless of background, experience, or knowledge level. Information should be presented in a way that is easy to understand and applicable to real-life situations.
Misinformation can be harmful—CHD Connects Hearts is committed to providing vetted, trustworthy resources that members can rely on for medical insights, advocacy tools, and community support.
Adaptation in Action:
✓ Members have access to a continuously updated library of educational materials, research updates, and expert-led discussions, ensuring they stay informed.
✓CHD Connects Hearts works with medical professionals, researchers, and advocacy leaders to ensure the accuracy and reliability of all shared information provided by them (we cannot govern all member posted items).
✓Resources are designed to be inclusive and adaptable, meeting the needs of newly diagnosed families, long-term CHD warriors, caregivers, and advocates alike.
✓As medical advancements, policy changes, and advocacy efforts evolve, the resources provided within the Centralized Hub will evolve as well, ensuring that members always have the most current and relevant information provided through the Affiliates.
5. Continuous Growth & Evolution Through Community Feedback
The CHD landscape is constantly changing, and the needs of patients, families, and caregivers evolve over time.
CHD Connects Hearts must remain adaptable, growing alongside its members to ensure ongoing relevance and impact.
Members play an active role in shaping the future of the community.
Their experiences, insights, and feedback drive improvements in resources, support systems, and advocacy efforts.
A strong CHD community listens, learns, and adjusts. CHD Connects Hearts is committed to continuously refining its offerings based on the real needs of the people it serves.
Adaptation in Action:
✓Member feedback is valued and used to shape new initiatives, refine resources, and improve engagement opportunities.
✓The Centralized Hub is designed to be dynamic, meaning that new tools, discussions, and support systems will emerge based on what members need most.
✓Quarterly community reviews allow CHD Connects Hearts to assess what is working, identify gaps, and introduce meaningful updates based on direct input from members.
✓As the CHD movement grows, CHD Connects Hearts grows with it—expanding its reach, refining its services, and ensuring that members always have the support they need.
AFFILIATES SECTION
AFFILIATES
The Genome of Values – The DNA of CHD Collaboration
These six pillars define how CHD Connects Hearts and its Affiliates drive meaningful change:
1. Patient, Family, and Policy-Centered Care
Why it Matters:
Every initiative must prioritize patients, families, caregivers, and the policies that shape their care.
Adaptation in Action:
✔Programs must evolve based on direct feedback from patients, families, and caregivers.
✔Patients and families should be active participants in research, advocacy, innovation, and policy change.
2. Collaboration and Community Building
Why it Matters:
CHD outcomes improve when patients, families, caregivers, medical professionals, researchers, and Policymakers work together in an adaptable, mission-aligned environment.
Adaptation in Action:
✔A Centralized Hub enables affiliates to collaborate fluidly, ensuring no effort exists in isolation.
✔Organizations can engage at different levels based on their capacity, expertise, and evolving priorities.
✔Patients play an active role in shaping discussions, community-building, and advocacy efforts to ensure their voices are at the forefront.
3. Advocacy and Empowerment Through Collaboration
Why it Matters:
Policy changes, funding increases, and research advancements are most effective when patients, families, and caregivers work alongside policy and advocacy groups.
Adaptation in Action:
✔Education tools equip individuals with the knowledge to advocate effectively.
✔Collaboration between patients, families, and advocacy organizations ensures that policy efforts are driven by real-life experiences.
✔Affiliates have flexible advocacy roles, from grassroots efforts to policy influence at the national level.
4. Research and Innovation
Why it Matters:
The future of CHD care depends on advancing research, sharing data, and integrating innovative solutions—all of which directly impact patients' health and quality of life.
Adaptation in Action:
✔Affiliates can share research, case studies, and success metrics to ensure evidence-based progress.
✔Organizations can create and participate in research collaboration opportunities that align with their capacity.
✔The Centralized Hub connects researchers, patients, families, medical providers and advocates, ensuring research efforts are informed by real life experiences.
5. Education and Awareness
Why it Matters:
CHD remains underfunded and misunderstood. Raising awareness fuels research, advocacy, and funding.
Adaptation in Action:
✔Every initiative should include an educational component to spread awareness.
✔Organizations can engage in awareness efforts in ways that complement their existing mission.
✔Collaborative Awareness Initiatives serve as a unifying opportunity that brings together affiliates, patients, families, researchers, organizations, and medical professionals—creating a movement across the entire CHD community that can impact at levels never seen before.
6. Support and Healing for Patients, Families, and Caregivers
Why it Matters:
CHD affects mental health, quality of life, and emotional resilience for patients, families, and caregivers. Holistic care must extend beyond medical treatment.
Adaptation in Action:
✔Dedicated peer-support networks ensure that patients, families, and caregivers receive ongoing, mission-aligned support.
✔Affiliates can create or integrate into existing support structures without having to duplicate efforts.
✔Programs should be responsive and evolve based on the shifting needs of CHD patients, families, and caregivers.
Principles of Adaptation – How CHD Connects Hearts Evolves for Impact
These five principles ensure affiliates have the flexibility to engage in ways that align with their mission, while benefiting from a unified, results-driven movement:
1. The Centralized Hub Model
Why?
Eliminates fragmentation by keeping all efforts, communication, and advocacy in one adaptable space.
How?
The "Go As You Grow Platform" functions as a spoke-and-wheel model, allowing every affiliate to connect, share, and take action at their own pace in the applicable phase of the CHD cycle.
Adaptation in Action:
✔ Streamlined collaboration between organizations, advocates, researchers, medical professionals, families, caregivers and patients.
✔ One-stop resource center for educational materials, research opportunities, and advocacy efforts.
✔ Unified messaging to maximize awareness and impact.
2. Flexible Collaboration Frameworks That Align with Affiliate Missions
Why?
Every CHD organization has a unique focus and approach, so partnerships must remain adaptable, scalable, and mission-aligned rather than one-size-fits-all.
How?
CHD Connects Hearts provides a dynamic framework that allows affiliates to engage at their level of expertise, resources, and mission priorities while remaining connected through shared values.
Adaptation in Action:
A customizable partnership model allows each affiliate to integrate in a way that best suits their goals and capacity while remaining part of a unified movement. Affiliates can choose their level of engagement, including:
✔Awareness & advocacy – Engaging in national campaigns while maintaining their independent initiatives.
✔Research collaboration opportunities – Connecting with other affiliates for funding, clinical trials, and patient-centered studies.
✔Community-building – Using the Centralized Hub to expand support networks and provide resources for patients, families, and caregivers.
✔Policy & legislative impact – Aligning patient stories with advocacy efforts to influence systemic change.
The Centralized Hub ensures cross-collaboration, enabling affiliates to adapt, pivot, and engage in new opportunities without disrupting their individual missions.
3. Data-Driven Progress & Measurable Impact
Why?
Emotional stories are powerful, butreal change requires data-driven outcomes.
How?
CHD Connects Hearts affiliates may share research, case studies, and success metrics to ensure funding and advocacy efforts are results-driven and evidence-backed if it fit’s into their mission.
Adaptation in Action:
✔ Affiliates have access to a centralized data-sharing opportunity for research collaboration.
✔ Transparent progress tracking ensures measurable impact across advocacy, research, and awareness initiatives.
✔ Real-time feedback loops between affiliates allow for continuous improvement in patient outcomes and policy initiatives.
4. Growth Through Affiliate Empowerment & Awareness
Why?
Affiliates need clear ways to engage, contribute, and benefit while remaining mission-aligned.
How? The affiliate program provides:
✔ Opportunities to offer workshops, educational materials, and resources to a larger audience.
✔ Collaboration opportunities for research projects, advocacy campaigns, and larger initiatives.
✔ Annual awareness campaigns that allow affiliates to amplify their impact collectively.
✔ Fundraising opportunities that benefit from the higher visibility and engagement of a Centralized Hub.
✔ Partnerships with other affiliates for larger-scale projects that reach and help more people.
✔ Expanded networking and visibility, helping organizations gain greater reach within the CHD community.
Adaptation in Action:
✔ Affiliates can scale their initiatives faster with the support of a unified network.
✔ Organizations that may have previously lacked visibility can leverage the hub’s reach for greater awareness.
✔ Multi-affiliate collaborations lead to larger, more effective impact campaigns.
5. Agility & Evolution Through Community Feedback
Why?
The CHD landscape evolves rapidly, and organizations must be adaptable.
How? CHD Connects Hearts ensures:
✔Improvements based on patient, family, caregiver, and affiliate needs.
✔Quarterly online affiliate summits to assess progress, share new opportunities, and refine strategies collaboratively.
✔ A flexible framework that allows affiliates to evolve their participation level as their organization grows.
Adaptation in Action:
✔ Regular check-ins with affiliates ensure mission alignment and evolving needs are met.
✔ Real-time adaptability enables rapid response to emerging challenges in CHD research, advocacy, and patient care.
✔Community-driven solutions ensure that CHD Connects Hearts remains a resource that continuously evolves.
Copyright 2025. All Rights Reserved. Privacy Policy. Terms and Conditions.
DISCLAIMER: Our resources are for educational and informational purposes only. We do not offer any medical advice. Always follow and consult your medical team. Our aim is to provide supportive content, direction, and strategies for building community connections while facilitating crucial conversations about CHD.
Copyright 2025. All Rights Reserved. Privacy Policy. Terms and Conditions.
DISCLAIMER: Our resources are for educational and informational purposes only. We do not offer any medical advice. Always follow and consult your medical team. Our aim is to provide supportive content, direction, and strategies for building community connections while facilitating crucial conversations about CHD.