Sustainability: Minimizing Our Footprint 
- Our entire team works remotely, significantly reducing commuting and any office space needs.
- Embracing digital solutions like Monday.com and QR codes, we minimize paper usage.
- Our events prioritize digital materials, virtual attendance, and eco-friendly practices
Green Initiatives 
- We celebrate nature with plantable name badges embedded with flower seeds, ready to plant and bloom.
- All our communications, from invitations to promotional materials, are digital.
- We are committed to ethically sourced, recyclable merchandise, encouraging the use of reusable items at events.
- Our research practices are green, with most meetings online and minimal sample disposal.
- Any excess food from Global Learning Conference 2024 donated to local food bank.
Carbon Footprint: Reduction Efforts 
- Where possible we use local speakers and staff, prefer public transport, and explore carbon offsetting for flights.
- Educating global practitioners reduces community member travel.
- We advocate for sustainable healthcare and host hybrid and virtual events to decrease travel needs.
Social
Educational Programs and Research Contributions
- Our EDS ECHO programs offer dynamic courses for global healthcare professionals, enhancing care for those with EDS and HSD. Localized programs, including a Spanish-speaking ECHO, address community needs.
- Advocacy education empowers community leaders, supported by our helpline, support groups, and Inspire forum, promoting social justice and health equity.
- We ensure diverse voices in our boards and working groups. Grants prioritize community needs, making research accessible to all.
Community Support and Accessibility
- Our free helpline and virtual support groups provide safe spaces for individuals with EDS and HSD. Outreach programs deliver tailored resources that foster social inclusion and well-being.
- Our events feature hybrid capabilities, thoughtful design, and accessible facilities. Media is accessible with captioning and alt-text for videos.
- The Accessibe.com plug-in enhances website inclusivity, promoting social equity in our ESG efforts.
Volunteering, Employee Engagement and Diverse Stakeholders
- Staff development includes targeted training and a buddy system for newcomers.
- We are launching a volunteer program to empower positive impact.
Equitable Access and Inclusion and Diversity
- We make educational resources and research findings globally accessible. Scholarships and competitions ensure participation for all.
- We are committed to diversity, equity, and inclusion, developing DEI training for all staff.
- We strive to make healthcare accessible to all, with inclusive events and research practices. We collaborate with healthcare providers, researchers, community member, advocacy groups, and donors to support diverse needs.
Governance
Organizational Structure , Policy Advocacy and Reform
- Our diverse, collaborative team and board work together to serve the community. Comprehensive training ensures excellence in all areas.
- We continuously improve, regularly reviewing and updating policies to stay current and compliant, welcoming feedback to grow and develop globally.
Ethical Guidelines and Codes of Conduct
- We adhere to rigorous standards and policies, fostering a positive, inclusive work environment.
Transparency, Accountability and Transparency in Research funding and Practice
- Transparency is central, with open communication and public financial records.
- Data privacy is protected by a dedicated Data Protection Officer and Data & Privacy Manager.
- Our research follows established protocols, with regular audits and performance reviews ensuring transparency and accountability.
Ethical Standards, Compliance and Risk Management
- We uphold high ethical standards, ensuring data privacy and community member consent.
- Active stakeholder engagement through surveys and feedback aligns us with community needs.
- Policies and training ensure compliance with HIPAA and GDPR.
- Expert advice helps manage risks, maintaining ethical behavior.
Future Goals:
Issue |
Solution |
Timeline |
| Further DEI knowledge for staff team | We will provide in house DEI training for all staff | Quarter 4 2024 |
| Carbon emissions from flights. | We are taking action to purchase carbon units to effectively offset our carbon emissions.> | Quarter 1 2025 |
| Providing feedback to participants on how their samples and survey responses have influenced research. | We will find an effective and data-protected way of providing this feedback. | Ongoing |
| Sensory triggers during events | We will look to collect feedback on sensory triggers to address them in future planning for events. | Ongoing |
