Table of Contents
Our guiding principles
The principles resonate with the mission and vision of Aniridia Europe (AE). They guide decision-making, collaborations, and interactions both internally among team members and externally with stakeholders.
Empathy and Compassion: AE demonstrating understanding and compassion towards individuals affected by aniridia, their families, and caregivers is fundamental. It emphasises the human aspect of our work and ensures a supportive environment.
Integrity and Accuracy: AE upholds the highest standards of honesty, transparency, and accuracy in disseminating information, conducting research, and collaborating with professionals, which ensures trustworthiness and reliability.
Inclusivity and Collaboration: AE emphasises inclusivity by engaging diverse perspectives and collaborating across disciplines and borders, fosters a richer understanding of aniridia, and encourages global cooperation.
Innovation and Advocacy: AE encouraging innovation in research, treatments, and support mechanisms while advocating for the needs and rights of individuals affected by aniridia drives progress and positive change.
Empowerment and Support: AE empowers individuals affected by aniridia to advocate for themselves, facilitates access to resources, and provides support networks to aid their journey toward better health and well-being.
Commitment to Excellence: AE strives for excellence in all endeavours, from research initiatives to educational campaigns, to ensure the highest quality outcomes and impact.
Environmental Responsibility: AE is committed to harmonising our mission with environmental stewardship. We actively aim to reduce our carbon footprint and this dedication ensures efficient resource management, cost-effectiveness, and a commitment to sustainability without compromising our mission’s impact or efficacy.
Social Sustainability: AE emphasises the importance of community, justice, inclusivity, and empowerment. These principles create a socially sustainable and supportive environment for individuals affected by aniridia, their families, and caregivers.
Our Objectives
These objectives serve as a roadmap, outlining specific actions and measurable outcomes to achieve our broader goals of spreading awareness, supporting research, advocating for guidelines, and fostering global collaboration in aniridia-related initiatives.
Objective 1: Disseminate Accurate Information
Key aims:
- Develop and distribute educational materials on aniridia and its treatments
- Collaborate with healthcare professionals to ensure accurate and accessible information
- Launch targeted social media campaigns to spread awareness and proper knowledge about aniridia.
Objective 2: Foster Research Collaboration
Key aims:
- Organise conferences, seminars, or symposiums to bring together experts in aniridia research
- Facilitate networking opportunities for professionals to encourage collaborative research initiatives
- Support and fund research projects focusing on aniridia and associated illnesses.
Objective 3: Advocate for Guidelines
Key aims:
- Engage with policymakers and medical associations to push for the development of national and international guidelines on aniridia
- Participate in relevant committees or forums to provide input and expertise for guideline formation
- Ensure dissemination and adoption of established guidelines within the medical community
Objective 4: Foster Global Associations
Key aims:
- Encourage and assist individuals affected by aniridia to form associations in other countries
- Establish communication channels to share experiences and resources among international associations
- Provide guidance and support for the growth and sustainability of newly formed associations
Our committment to sustainability
Social responsibility
It refers to Aniridia Europe’s (AE) ability to contribute positively to the well-being of individuals, communities, and society at large over the long term. Here are several ways in which it contributes:
Empowering Patients: AE empowers individuals by providing information, resources, and a supportive community. This empowerment leads to increased self-efficacy and a better quality of life for patients. By doing so, AE contributes to the social sustainability of the community by fostering resilience and self-management among individuals facing health issues.
Advocacy for Health Policies: AE advocates to influence healthcare policies and systems. By actively participating in policy discussions, these organisations contribute to creating a more equitable and accessible healthcare system, promoting social justice and inclusivity.
Community Building: AE creates a sense of community among individuals facing similar health challenges. Community-building enhances social connections, reduces isolation, and fosters a supportive environment. Strong social connections are vital for individuals’ and communities’ overall well-being and resilience.
Education and Awareness: AE is crucial in raising awareness about specific health conditions. It contributes to developing an informed and health-conscious society by providing education and information. This focus on preventive measures and early detection contributes to the overall health and well-being of the community.
Diversity and Equality: AE prioritises diversity and equality as a democratic, inclusive organisation. It ensures that all member representatives can participate in its activities, regardless of their background, disabilities, and religious, sexual and political preferences. By championing diversity and equality, AE fosters a culture of inclusivity and fairness, contributing to the social sustainability of the communities it serves.
Reducing Stigma: AE reduces the stigma associated with certain health conditions. AE promotes understanding and empathy and creates a more inclusive and tolerant society. This helps individuals facing health challenges to be fully integrated into their communities.
Collaboration and Partnerships: AE collaborates with healthcare providers, government agencies, and other stakeholders to improve the overall healthcare landscape. This collaborative approach promotes a more integrated and sustainable healthcare system, benefitting the entire society.
Research and Innovation: In summary, the social sustainability of AE is evident in the multifaceted contributions to community well-being, empowerment, advocacy, and the creation of a more inclusive and informed society. AE plays a vital role in building a sustainable and resilient healthcare ecosystem by addressing health’s social aspects.
Environmental responsibility
Aniridia Europe deliberately focuses on reducing its environmental impact through various initiatives. Here’s a breakdown of our organisation’s environmental impact approach in bullet points:
Digital Operations: We significantly reduce reliance on paper and energy consumption associated with traditional office setups by operating without a physical office and conducting tasks and meetings digitally.
Virtual Meetings: Leveraging meeting technology minimises the need for extensive travel, reducing carbon emissions and our overall environmental footprint.
Online Publications: Hosting our publications primarily in web-based formats and disseminating them through digital channels significantly reduces the use of physical resources like paper while maximising accessibility.
Occasional Physical Materials: When necessary, tailored physical materials are produced selectively, ensuring minimal environmental impact while meeting specific requirements.
Strategic Event Alignment: By synchronising face-to-face board meetings with more significant events like the European Aniridia Conferences, we optimise impact while minimising the frequency of physical gatherings, further reducing our environmental footprint.
Commitment to Sustainability: These comprehensive measures underscore our commitment to sustainability, responsible resource management, and integrating environmentally conscious practices into our operational strategies.
Economic sustainability
Aniridia Europe (AE) is committed to secure and manage financial resources in a manner that allows it to fulfil its mission and provide valuable services to its members or the broader patient community over the long term. AE is crucial in advocating for the needs and rights of individuals with specific health conditions. Here are some key considerations for economic sustainability:
Diversification of Funding Sources:
Relying on a single funding source can pose risks. AE should seek to diversify its funding streams, including grants, donations, sponsorships, and partnerships.
Exploring public and private funding options and collaborating with government agencies, foundations, and corporate sponsors can contribute to a more stable financial base.
Grant Writing and Fundraising:
Developing expertise in grant writing and fundraising is essential for AE. This involves identifying potential funding opportunities, crafting compelling proposals, and building relationships with potential donors.
Hosting events, campaigns, and appeals can also effectively engage the community and raise funds.
Membership and Community Engagement:
Building a strong and engaged membership base is a key component of economic sustainability. Memberships can provide a steady source of revenue and demonstrate community support, making it easier to attract other funding.
Regular communication with members, involving them in AE activities, and seeking their input can foster a sense of belonging and encourage continued support.
Strategic Partnerships:
Forming strategic partnerships with other patient organisations, healthcare providers, research institutions, and businesses can open new opportunities for funding and collaboration.
Leveraging these partnerships can also enhance the AE’s visibility and influence, potentially attracting more resources.
Financial Management:
Implementing sound financial management practices is crucial. This includes budgeting, monitoring expenses, and ensuring transparency in financial reporting.
Establishing reserves or contingency funds can provide a financial cushion during challenging times.
Advocacy for Funding and Policy Support:
AE can advocate for policies that support healthcare funding, research, and patient services. This advocacy can contribute to increased government and private-sector support.
Engaging in discussions with policymakers, participating in relevant forums, and making the case for the economic and societal benefits of supporting AE are important advocacy strategies.
Long-Term Planning:
Developing a strategic plan that outlines the AE’s goals, priorities, and resource needs over the long term is essential for economic sustainability.
Regularly reviewing and updating the strategic plan ensures adaptability to changing circumstances and helps AE stay focused on its mission.
By addressing these aspects, AE can enhance its economic sustainability, ensuring that it is well-equipped to serve the needs of its members and contribute meaningfully to the broader healthcare landscape over time.
Code of Ethics
Preamble
The ethical values underpinning all skills and behaviours should give each organisation member a framework and moral compass.
Each Aniridia Europe (AE) member (full or affiliated) pledges to be guided in all their contact with patients, doctors, scientists, colleagues and the general public by timeless moral values. Fairness, truth, and friendship should always guide their relationships.
Each AE member should advocate for society by expressing their opinion on current issues while avoiding political biases.
Each AE member strives to be trustworthy and not to negate such trust through any fraud, through oppressing the free will of others, or naturally through one’s negligence or ignorance.
Each AE member complies with the rules of transparency in all financial matters, which means they will not conceal any benefits they may gain.
Each AE member undertakes never to use any of the federation’s assets for the benefit of their own or another’s business interests without the express written consent of the AE Board.
Ethical norms
The relations between the members of Aniridia Europa are based on the principles of integrity, mutual trust, respect, and interests.
I. Integrity
(1) Each AE member must be honest and straightforward with the other.
(2) Each AE member must uphold Aniridia Europe’s values and principles in every action and decision.
(3) Each AE member must focus on achieving Aniridia’s objectives and strategies.
II. Trust
(1) Each AE member respects other members, partners and collaborators and treats them as we want to be treated.
(2) Each AE member has confidence in the other’s capabilities and intentions.
(3) Each AE member believes that people work best with a foundation of trust.
III. Respect
(1) Each AE member believes all individuals can and want to contribute to the fullest potential of AE.
(2) Each AE member respects all individual’s rights and positions without limitations to gender, age, race, political affiliation, or sexual orientation.
(3) Each AE member values differences.
(4) Each AE member is honest with people about their performance.
(5) Each AE member treats all with dignity, respect and compassion.
(6) Each AE member must accept personal values and respect others.
IV. Interests
(1) Each AE member has an inseparable interest in Aniridia Europe
(2) Each AE member believes that doing what is suitable for ANIRIDIA with integrity will lead to mutual success for both.