Mission & Vision
Our mission is to support and drive research, raise awareness in the general community, as well as connect, educate, serve, and empower families impacted by PURA Syndrome.
About us
The PURA Syndrome Foundation is a globally focused charitable organization, registered in the USA as a 501(c)(3) tax-exempt non-profit corporation. Governed by volunteer international board members, the Foundation provides the global community with a place to belong for those who may feel isolated by rare disease. The Foundation also provides access to medical research being completed and educates people about the condition. We keep our families informed by organizing a yearly global conference, developing educational materials and sending out newsletters.
Our biggest annual event is a conference where the families of patients with PURA syndrome can convene, support each other and share resources. Families also hear from medical researchers who are working to understand PURA syndrome. Bringing the families and researchers together at this event increases the understanding of the research being done and how families can help contribute to furthering the research. Having a close relationship with our Global Research Network of scientists and doctors enhances the quality of life for patients and their families.
Our Mission and Values
The PURA Syndrome Foundation supports and educates patients and their families, creating a global community. This community provides a place of belonging to those who may otherwise feel isolated by rare disease, enriches the medical research being completed and educates those outside the community about the condition.
Our mission is to support and drive research, raise awareness in the general community, as well as connect, educate, serve, and empower families impacted by PURA Syndrome.
Our values are:
- Respect – everyone is valued
- Community – everyone belongs
- Teamwork – Foundation, families, clinicians and researchers as one
- Continuity – plans for future growth and change
- Responsibility – ethics and governance
Governance Committees
Committee members are volunteers drawn from the Board, the PURA Syndrome Global Research Network and the PURA syndrome parent community. When we need people to join a committee we either issue a general invitation or target those who we believe may have a particular interest and skills in the issue and area. Examples of some of our committees include our Annual Conference Committee and our Grants Committee.