Global Heart Hub Affiliate Terms of Engagement

1. Purpose of Affiliation

Global Heart Hub is the alliance of cardiovascular disease (CVD) patient organisations (called GHH Affiliates), aiming to create a unified global voice for those living with or affected by cardiovascular disease. Affiliates are valued partners in this mission, contributing to shared learning, collective advocacy and coordinated global action. Affiliation signifies alignment with GHH’s mission and participation in a trusted, collaborative community, contributing to the continued growth, reach and impact of GHH and its global patient network in improving cardiovascular health outcomes worldwide.

2. Alignment with GHH Values: Expectations of Affiliates

In order to align with GHH values, Affiliates are expected to:

1. Operate as a not-for-profit or community organisation – Affiliates must function as a not-for-profit, charity, social enterprise, umbrella organisation or community / volunteer-led organisation, with activities primarily focused on cardiovascular disease or within the CVD landscape.
2. Maintain a patient-focused mission – Ensure that the organisation’s purpose, initiatives and strategies provide a clear pathway for elevating patient voices and meaningfully incorporating lived experience to inform priorities and decision-making. GHH recommends that patients and carers are meaningfully represented across organisational leadership, for example in having at least 50% of the governing board or committee be patients or carers.
3. Engage constructively – Contribute to the GHH community in an inclusive, respectful and professional manner. Affiliates are expected to uphold GHH values in all interactions, fostering a positive and collaborative environment that respects each Affiliate’s achievements, stage of development and circumstances.
4. Uphold integrity, transparency and independence – Adhere to all relevant local, national and international regulations, including those related to data protection, ethical conduct, and non-profit governance. Organisations must be free of any influence from any Med-Tech, Pharma or other industry/enterprise which could present a real or perceived conflict of interest. If industry funded, organisations must be multi-industry funded (after 2 years for start-ups) and must not engage in the promotion of any medical product or device.
5. Adhere to best practice – Organisations must ensure that their resources and communications for patients and all audiences uphold the highest standards of accuracy, reliability and credibility, including being aligned with internationally recognised, evidence-based best practice guidelines. In doing so, Affiliates recognise a shared responsibility to one another, grounded in trust, transparency and commitment to the collective mission. GHH recommends that organisations have access to specialist clinical expertise to support this alignment.

3. Use of GHH Affiliation and Branding

The use of the GHH name, logo, or branding for campaigns, events, publications or partnerships requires prior written approval from GHH.

Affiliates must not use GHH branding or affiliation in a way that could imply endorsement of products, services, policies or external organisations without explicit written consent from GHH. All representations of affiliation must reflect the integrity, independence and reputation of GHH.

4. Communication and Collaboration

GHH encourages open communication between Affiliates and the GHH team. Affiliates agree to:

• Keep GHH informed of relevant organisational updates, leadership changes or public communications that may affect their affiliation;
• Respect confidentiality in shared discussions, documents or strategic sessions; and
• Engage in a spirit of partnership, collaboration and mutual respect across the GHH network.

5. Review and Continuation of Affiliation

Affiliation with GHH is contingent on alignment with the GHH values, mission and standards. GHH reserves the right to review an Affiliate’s status at any time and may, at its sole discretion, suspend or terminate affiliation, including if:

• The Affiliate no longer aligns with the GHH mission, values or ethical standards;
• The Affiliate engages in conduct that could harm the GHH reputation, relationships or community trust;
• There is evidence of unethical or disruptive behaviour, misinformation, harassment or discrimination, or commercial conflicts of interest; or
• The Affiliate becomes inactive, unresponsive, or ceases to operate.

Where possible, GHH will engage in dialogue with the organisation to address concerns before any decision is finalised.

6. Amendment of Terms

GHH may revise these Terms of Engagement as necessary to reflect evolving best practice, governance needs or community priorities. Affiliates will be informed of any changes, and continued participation signifies acceptance of the updated terms.

7. Affiliate Agreements

The organisation and its representatives confirm the following agreements:

1. I agree that Global Heart Hub may store and retain the information provided in the affiliation survey in the GHH database and share it internally as necessary for affiliation-related purposes.
2. I agree to Global Heart Hub sharing public information about my organisation on the GHH website.
3. I declare that all information provided to Global Heart Hub is correct and accurate.
4. I agree to abide by this Terms of Engagement. Failure to do so may result in removal from GHH Affiliation or GHH Networks or Working Groups at the discretion of GHH.

8. Acknowledgement

By maintaining affiliation with Global Heart Hub, the organisation acknowledges that it has read, understood, and agrees to abide by these Terms of Engagement.