Mmemme Ndụmọdụ mkpụrụ ndụ ihe nketa
Genetic counsellors play a crucial role in guiding families through a genetic diagnosis and understanding how genetic conditions may impact their lives. We believe this role is incredibly beneficial for the EB community, as well as for both current and future genetic counsellors. Through this research, we aim to increase awareness of EB among genetic counsellors and address gaps in knowledge.
We were proud to support three students from Cardiff University in their research at the end of 2024 – March 2025, covering important topics where knowledge gaps exist. Input from our members has not only informed these projects but to also help improve support and resources for individuals and families affected by EB. Thank you to everyone who contributed to these research projects! Your insights have been invaluable in helping us better understand the needs of the EB community. These opportunities are now closed for participation, but we are excited to share the results with you soon.
Helen Shepperson explored the experiences of young people with EB in UK educational settings, such as school, college, or university. To better understand how living with EB has impacted their educational journey, the different challenges and concerns faced, and what helps to overcome them. Helen managed to interview 8 different members to understand their own experiences.
Catherine Silk explored how adults with EB manage multiple medications and how this impacts their daily lives. The study provided valuable insights into medication routines and challenges, and interviewed 6 members to understand their experiences.
Mia Keatings research explored how having a family member with EB influences the family planning decisions of the extended family, aunts, uncles, and cousins. Mia interviewed 4 members to understand their experiences.
A Huge Thank You!
We were able to engage with 18 participants in total who generously shared their experiences, helping to shape the future of EB research and educate the new generation of genetic counsellors.
Gịnị bụ Next?
We are currently analysing the results of these projects and look forward to sharing key findings with you soon. Member involvement has played a crucial role in shaping these studies, and we appreciate your time and commitment to advancing EB research. Stay tuned for updates! If you have any questions, please feel free to reach out to us.
We’re also excited to share that in the second half of 2025, we’ll be supporting another Genetic Counselling student on a new project! Stay tuned for updates as we continue to foster innovation and learning in the field.