top of page

Building smiles and empowering Butterfly Children- research and webinar on oral health and QoL


On Saturday August 5th 2023 DEBRA Indonesia hosted a free webinar attended by 178 participants made up of EB patients and their families, and Indonesian healthcare workers (dermatologists, dentists, general practitioners, and nurses) with the goal of increasing awareness and knowledge regarding oral and dental health for EB patients.

The webinar was intended for EB patients and their families to share their experiences and struggles with EB on a daily basis with experts. It was expected this would enable them to overcome the difficulties they face regarding oral and dental health.

The event was led by the master of ceremony Anita Dwi Lestari (A.Md.T), supported by the moderator Juli Loisiana Butar Butar (S.Si, M.Sc), both EB patients.

Keynote speakers specialising in wound care management and nutrition for EB patients, included

  • Prof. Dr. drg. Arlette Setiawan (Sp.KG), Subsp. AIB(K), M.Psi, FSCDA, FiADH) a professor and senior consultant in dental and oral health in children with special needs ;

  • Dr. July Iriani Rahardja (Sp.DV MM), a dermatologist, explored various type of wounds, several wound dressing options about wound management and

  • Dr. Sandi Nugraha (SpA, M.Biomed), a pediatrician specializing in nutrition foccussed on nutritional management for EB patients, in particular how to recognise and treat anaemia, which is common problem in EB patients.

This was followed by engaging Q & A session. The event concluded with an interactive quiz with EB patients and their families.


DEBRA Indonesia also took part in studies on parental knowledge of their children’s dental health and perceptions of the quality of life of children with EB. This study gathered information from 18 parents of children with EB about their knowledge of their children’s oral health and their perceptions of the oral health-related quality of life (OHRQOL) of children with EB. The data was gathered using two questionnaires that assessed parent’s knowledge of oral health and PCP-Q 16 (Parental Caregiver Questionnaire 16) which collects data on parent’s perceptions. The study is currently being submitted for publication as a journal paper titled “Assessing Parental Awareness of Children’s Oral Health and Quality of Life in Epidermolysis Bullosa: A Comprehensive Study”.

DEBRA Indonesia hopes that by organising the webinar and participating in the research, the Butterfly Children and their family will be more aware of their oral and dental health, allowing them to smile with confidence and improve their quality of life.


bottom of page