Voices for Change: DEBRA Jordan hosts Awareness Day

Last year, DEBRA Jordan held a powerful event dedicated to advocating for people living with epidermolysis bullosa (EB) and their families. Voices for Change was an Awareness Day held during EB Awareness Week. Supported by a grant from DEBRA International, the initiative served as both a community-building effort and an educational campaign, successfully bringing together EB patients, caregivers, healthcare professionals, media representatives, and members of the local community.

The event marked a significant milestone for DEBRA Jordan’s outreach efforts. For the first time, the team was able to gather EB patients from across the region in one place to connect, share, and learn. The day was filled with opportunities for attendees to gain accurate medical knowledge from EB experts, attend informative awareness sessions, and engage directly with healthcare professionals. Patients and families also had the chance to voice their personal challenges and needs in a safe, supportive space.

A key objective of the event was to draw public attention to the realities of living with EB; the symptoms, the complications, and the emotional toll it takes on individuals and their families. Building trust and rapport with the community was central to the event’s design, ensuring that patients not only felt seen and heard, but also empowered to advocate for their rights and wellbeing.

Throughout the day, participants took part in interactive discussions, shared their lived experiences, and connected with others who understand the daily battles of EB. The event also drew the attention of major local media outlets. Two television reports were produced and aired on the most-watched local channels, significantly raising the profile of both the condition and the organization. In the days following the event, DEBRA Jordan received multiple invitations for interviews, providing further opportunities to spread awareness and advocate for change.

Families expressed a renewed sense of connection, strength, and hope. It was clear that the most profound impact was on the emotional and psychological wellbeing of the participants. For many, it was a rare opportunity to break the isolation that often comes with rare diseases like EB.

Voices for Change highlighted the urgent need for sustained advocacy. Many EB patients in Jordan continue to face systemic neglect, particularly from public health institutions. DEBRA Jordan reiterated their committed to intensifying its efforts to raise awareness, support families, and advocate for the healthcare rights of every person living with epidermolysis bullosa. The Voices for Change event was not just a moment of visibility, it was a step toward lasting impact.