On October 4th, 2016 two beautiful identical twins were born in Lisbon.
Maria Leonor and Maria Beatriz were immediately diagnosed with Lamellar Ichthyosis as they were born as Collodium Babies.
Lamellar Ichthyosis is a very serious rare genetic disease that so far had no available treatment...
....why so far?
A group of researchers developed an experimental treatment that resulted in the healing of the skin, in others words: a THERAPY!!
Now we need to make it available for thousands of babies and adults affected by this condition. Help us finance it!
However due to the comparatively small number of patients, it is hard to find pharma companies willing to invest in the complete development of this treatment.
That is why we need all the help to make it happen!
Francisco and Elena de Calheiros, together with their families, friends, and most of all their amazing doctors, have been studying and struggling to find a solution for their children's condition.
It was along these many months of researching that they came across the studies of this great team of dermatologists and biologists who had been working on a cure for exactly this type of ichthyosis for some years. The wonderful German team was contacted both by the parents and their dermatologist, Prof. Tadini, and a meeting was set up early in December 2017, where it was decided that Francisco and Elena would be working as hard as possible to help the doctors and researchers find the funds to prove that their ENZYME REPLACEMENT THERAPY is the cure all of us were waiting for.
"We believe that everything happens for a reason. Our children were born with lamellar ichthyosis so that we could unite with our dear friends all around the globe and the many existing institutions and associations, to finally find a cure for this rare condition that has been ignored for too long. Now, for the first time, we have the possibility to really make a difference and we embrace this opportunity that came to us thanks to our children".
UFFI President and mother of Leonor and Beatriz, the twins who inspired the creation of the Comitato UFFI
UFFI Supporter and Dermatologist of Beatriz and Leonor and many other patients with Ichthyosis. He is a consultant in the Neonatal Pathology Divisions for hereditary skin diseases of many hospitals.
UFFI Secretary and grandmother of Leonor and Beatriz, the twins who inspired the creation of the Comitato UFFI
UFFI Advisor and grandfather of Leonor and Beatriz, the twins who inspired the creation of the Comitato UFFI
UFFI Advisor and grandfather of Leonor and Beatriz, the twins who inspired the creation of the Comitato UFFI
UFFI Advisor and uncle of Leonor and Beatriz, the twins who inspired the creation of the Comitato UFFI