Patient Advocacy

Patient Advocacy

At Branca Bunús, we seek to put the patient’s at the forefront of our thinking. This is enabled through our relationships which we have fostered over time with patient advocacy groups, patients, clinicians and carers. Given that RDEB is a rare disease, this stakeholder engagement is paramount and so we encourage any interested parties in Branca Bunús to get in contact through our email address: [email protected]

A rare disease, sometime referred to as an orphan disease, is any disease that affects a small percentage of the overall population. Worldwide there are more than 7,000 known rare diseases.

Rare diseases not only affect the person diagnosed, they also impact family, friends and society as a whole. Most rare diseases have no cure or treatment, so living with a rare disease can be a constant learning and evolving experience for all affected.

External Resources

For those seeking additional information regarding current updates in research and clinical management of EB worldwide.