Project Overview:

This project is dedicated to collecting and archiving the experiences of individuals living with sickle cell disease. Through this initiative, we aim to document the changes in treatment and management of the disease over time, to educate and raise awareness about the condition.

Principal Investigator:
Marie-Claire Kofi (CEO, Plasma of Hope)

Purpose of the Project:
The purpose of this oral history project is to capture the personal experiences and stories of individuals affected by sickle cell disease, to better understand the evolution of treatment and the impact of the disease on individuals' lives.

What Will Participation Involve?

If you agree to participate, you will be asked to:

• Engage in a recorded interview discussing your personal experiences with sickle cell disease.
• Allow the interview to be archived and potentially used in exhibitions, presentations, and online platforms to educate others.
• Participate in follow-up sessions if clarifications are needed.

Duration of Participation:
The interview will typically last between 1 to 2 hours. Follow-up sessions, if required, will be scheduled at your convenience.

Risks and Discomforts:
While there are no direct physical risks involved in participating, discussing personal experiences with sickle cell disease may cause emotional discomfort. Please let the interviewer know if you feel uncomfortable at any time during the interview.

Benefits of Participation:
By participating, you contribute to the broader understanding of sickle cell disease, which can influence future treatments and public perception. Your stories will help reduce stigma and increase awareness about the condition.

Confidentiality:
Your privacy and the confidentiality of your data will be maintained throughout the project. Identifiable information will only be shared with your explicit consent, and all data will be stored securely in compliance with data protection regulations.

Voluntary Participation:
Your participation in this project is entirely voluntary. You are free to withdraw at any time without penalty or loss of benefits to which you are otherwise entitled.

Recording Preference:
The interview will be recorded either as a video or an audio recording. Please let us know which format you would prefer for the recording.