Epidermolysis Bullosa (Butterfly Disease) Wound Care Included in National Reimbursement System in Türkiye – A 2015 Milestone
In 2015, DEBRA Türkiye achieved a historic policy milestone for individuals living with Epidermolysis Bullosa (EB), commonly known as Butterfly Disease.
Following structured advocacy efforts and institutional engagement led by Adem Akyüz, essential EB wound care products were officially included in the reimbursement system of the Turkish Social Security Institution (SGK).
Understanding Epidermolysis Bullosa and the Need for Wound Care Support
Epidermolysis Bullosa is a rare genetic skin disorder characterized by extreme skin fragility, causing painful blisters and chronic wounds. Patients require continuous, specialized wound care management, including advanced dressings and medical supplies.
Because EB is a rare disease, access to affordable and sustainable wound care treatment is often a major challenge. The cost of medical dressings can create significant financial strain for families.
Recognizing this urgent need, DEBRA Türkiye initiated formal consultations with national authorities to ensure that EB wound care supplies were recognized as essential medical necessities under national healthcare regulations.
Policy Advocacy and Social Security Coverage
Through comprehensive documentation, official submissions, and sustained dialogue with relevant public institutions, amendments were introduced within the national Health Implementation Communiqué (SUT).
As a result, essential wound care materials for Epidermolysis Bullosa patients were incorporated into the national social security reimbursement policy.
This reform ensured:
- Sustainable access to life-saving wound care products
- Official recognition of EB within healthcare reimbursement frameworks
- Reduced economic burden for families affected by Butterfly Disease
- Strengthened rare disease advocacy in Türkiye
A Turning Point for Rare Disease Advocacy in Türkiye
The 2015 reimbursement decision marked a transformative moment for rare disease policy in Türkiye. It demonstrated that structured patient advocacy, institutional cooperation, and rights-based leadership can lead to systemic healthcare improvements.
Under the leadership of Adem Akyüz, DEBRA Türkiye established a strong example of how civil society engagement can influence national health policy and expand social protection mechanisms for vulnerable patient groups.
Continuing the Mission
Today, DEBRA Türkiye continues to advocate for:
- Improved healthcare access for EB patients
- Stronger rare disease policies
- Sustainable wound care reimbursement systems
- Enhanced quality of life for individuals living with Epidermolysis Bullosa
The 2015 milestone remains a foundational achievement in the ongoing effort to secure dignity, protection, and equitable healthcare access for all people affected by Butterfly Disease.
SEO Keywords (for backend use)
Epidermolysis Bullosa Turkey
Butterfly Disease reimbursement
EB wound care policy
Rare disease advocacy Turkey
Social security coverage EB
Wound care reimbursement system
DEBRA Türkiye