"nothing about me without me "
The Glut1 Deficiency Foundation is establishing a Patient Advisory Board to hear and learn directly from patients.
This special effort is part of our PCORI project to build a strong, patient-centered research foundation in our community by helping each of us:
- understand how research works
- decide if we want to take part in research
- decide if research and the results are trustworthy
- make informed decisions about our own care
Research is patient-centered when it is focused on what patients want, need, and what is important to them.
How do we know what is important to patients?
We have to ask, and we have to listen.
Usually it is the parents and caregivers who participate in surveys and share insights and experiences. Their thoughts and ideas are important, too, but they may be different from what is most meaningful and important to patients.
We want to ensure those most affected by this disease have the opportunity to be part of this process, have their voices heard, and have a strong foundation to be better prepared and more engaged in shaping their own futures.
Members will be recruited through an application and interview process. Glut1 Deficiency patients who are 18 years old or older are eligible to apply. Meetings will be conducted in English, but patients from any country in the world are eligible.
Sandra Ojeda, Glenna Steele, Maddison Hall, and Dana Pottschmidt will lead this Patient Advisory Board effort.
The June 2023 Overcomers adult virtual patient support group was used to explain the purpose of the Patient Advisory Board, gather feedback on what criteria should be used to select members, and what the expectations should be. We also gathered input on the application process.
goals of the patient advisory board
- learn more about what patients need
- learn more about patient priorities
- equip patients with information about research fundamentals
- help patients make informed decisions about their care
- provide a representative voice for patients
- help the G1DF serve patients better
expectations and responsibilities
- Virtual meetings will take place every three months (quarterly).
- Meeting days and times will be determined by members.
- Members should attend 75% of the meetings.
- Members should actively participate in meetings and activities.
- Members should communicate as needed in a timely manner.
- Members will serve as a representative voice for the patient community as needed.
- Members will receive a $500 stipend per calendar year for successfully fulfilling expectations and responsibilities.
- Applications will be accepted now through July 31st.
- Selections will be made by the end of August.
- The first meeting will take place in September.
- The initial project period and membership terms will be two years, but if it goes well, we want to continue!
Patient Advisory Board Member application
Our goal is to have diverse voices on the Patient Advisory Board so that patients are represented across the spectrum of disease and personal life experiences. We are asking the following questions to help fulfill that goal. Your responses on the application will only be shared with the project leaders and will not be kept or stored.