Xia-Gibbs Society represents a global community of persons affected by Xia-Gibbs Syndrome (XGS) and their families, a disease that does not discriminate based on race, gender, socio-economic status or linguistic group. Persons with XGS live with a range of disabilities, so we are committed to advocating for the rights and dignity of differently-abled persons, who should be supported to fully participate in society as equals.
As an organization, Xia-Gibbs Society is committed to the principles of workplace diversity and inclusion. We believe that:
- All individuals have the right to work and volunteer in a climate characterized by mutual respect and integrity that enables them to reach their full potential.
- There is a need for balanced representation of women and men at all levels, and in key organizational and management decisions.
- The rights and abilities of differently-abled persons in the workplace should be protected and respected.
- The fact that we work with and within culturally and linguistically diverse communities should be reflected in our workforce and in our organizational practices.
The last few years have seen progress and innovations in the treatment of rare diseases and in the delivery of care. However, this comes alongside significant inequalities that, at their most extreme, can determine people’s chances of survival, quality of life or their ability to fully participate in society.
These inequalities in health can lead to differences in the quality and speed of diagnosis, the variety of treatments and therapies available, or rates of survival. But inequalities can also be seen quite clearly in the:
- quality of patient experience, including the relationship between patients and professionals.
- equality of voice, including those from frequently ignored communities.
- ability to self-manage, including access to involvement, patient leadership, or peer support activities.
- allocation of resources.
Xia-Gibbs Society believes that, collectively, groups representing rare disease communities can overcome the inequalities and barriers some people living with rare diseases experience.
We see inequalities as belonging not just to the communities who experience them, but as a fundamental insight into our health and social care systems. Focussing on these systems can lead to opportunities for innovation and new thinking about how to address the impact of rare diseases on communities around the world.