G-1X48L403S6
top of page

Mildmay’s Dietitian Represents at 2024 DEBRA Brazil Congress for EB Awareness

EB Awareness week 2024 graphical banner

As we mark the start of EB Awareness Week 2024 (25th–31st October), we are pleased to announce that our specialist dietitian, Kattya Mayre-Chilton, was honoured by an invitation to present Clinical Practice Guidelines at the 5th Annual DEBRA Brazil Congress earlier this month in São Paulo.


This prestigious event, which gathered patients, advocates, clinicians, and researchers, shines a spotlight on the latest advancements in EB (Epidermolysis Bullosa) research, clinical care, and advocacy.


The Congress, held at the historic Casa Melhoramentos, featured a range of sessions, workshops, and keynote addresses, including an inspiring talk by Dr. Peter Marinkovich, a world-renowned EB researcher. With a patient-centred motto, “Nothing about us without us,” the two-day congress ensured that the voices of those living with EB were front and centre, offering invaluable insights into the daily struggles and hopes of the EB community.


Mildmay's specialist dietitian, Kattya, during her presentation
Mildmay's specialist dietitian, Kattya, during her presentation

Kattya’s presentation on Clinical Practice Guidelines is particularly significant as these guidelines offer critical frameworks for improving patient care and quality of life for those affected by EB.


With Toni Roberts; Co-Founder of DEBRA South Africa and President of DEBRA International Youth Council
With Toni Roberts; Co-Founder of DEBRA South Africa and President of DEBRA International Youth Council
With Anna Carolina Rocha (Brazil) and Toni Roberts (South Africa)
With Anna Carolina Rocha (Brazil) and Toni Roberts (South Africa)

Her work doesn’t stop in Brazil. In November, Kattya will continue raising awareness about EB through her virtual lecture for dietetics and nutrition students at NOVA University in Lisboa, Portugal, further emphasising the importance of education and global collaboration in the fight against this rare condition.



What is EB?

Epidermolysis bullosa (EB) refers to a group of rare inherited skin disorders that cause the skin to be exceptionally fragile. Even the slightest trauma or friction can result in painful blisters.


Infographic on what EB is

EB Awareness Week, observed annually from 25th to 31st October, is dedicated to increasing public awareness and uniting people living with EB worldwide.



EB statistics: Until 2022, there were no approved therapies
EB statistics: 70% of cases are known as EB Simplex

EB statistics: Half a million people are affected globally
EB statistics: $36k dollars is the average yearly costs for a person with EB

EB statistics: Up to 4 hours a day is spent on dressing changing

Comments


bottom of page