Category: Women Trailblazers
VZW EPP Belgium
As EPP is an extreme rare, but a truly painful disease, someone had to stand up for those patients. Tinne did this and still fights every day for the patients. By networking with patientorganisations, patients, doctors, governments, national medical agencies all over the world. She went to the EMA 7 years ago to give a testimony on patients with EPP, gathered the pharmaceutical company together there, and succeeded in making EPP a registered disease in Europe, at this moment the procedure is running at the FDA in the united states. After registration different countries already reimburse the medication, which takes away the pain and make patients lead a more normal life (as the disease can't cure). In the other countries we are still fighting for reimbursement! Tinne Cools
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Tinne has been fighting for years to get treatment for EPP
Tinne was part of the delegation of patient representatives at the European Medicinces Agency, when approval of the first and life-changing treatment for the ultra-rare condition EPP (erythropoietic protoporphyria) was discussed. Her moving statement made the regulators understand - probably for the first time in this lengthy proceedings - what burden EPP means to the sufferes and how the afamelanotide treatment enables us to finally have a full and normal life. For the first time ever, patients with EPP now can enjoy sunlight, outdoor activities with family and friends. I am deeply grateful for her dedication and support her nomination with all my heart.
Tine has such a big heart. A worrier of what is right.
I have suffered with EPP all my life (60 years old). I will probably never benefit with the advances that are being made in medicine but I worry for my children and all sufferers. We (EPP sufferers) need as much representation as possible because the condition is so rare and therefore does not get that attention it needs. I dream of a day in the sun!
Because she was fighting for medical tratment for EPP, patients now can be trated. I thank her and all others for that hard work.
Weil ich selber von dieser Krankheit betroffen bin und ich froh bin, dass es Menschen gibt, die sich wie Frau Tinne Cools für uns Epp-Patienten in vorbidlicherweise einsetzen.
Tenho essa doença e sou obrigada a evitar o sol constantemente, isso é muito triste e limitante.
Ze wilt er alles aandoen om mensen met EPP een deftig leven te geven en dat vind ik ontzettend knap.
Ze verdient om deze award te winnen
Her dedication for this cause has earned my respect.
She deserves to be here and to be able to speak for people with such rare diseases proves that she cares for more than just herself
Bruno De Herdt
Great work Tine, pushing and fighting making the medication of this disease reimbursed in every country!
She is a very authentic and altruïstic person with a big heart!
Danny de Roode
She is a strong fighter for the disease of EPP. Because of her sun she moves heaven and earth to give him a better life.
It is great what Tinne does!
She is the driving force for the Belgian Association of Erythropoetic Protoporphyria (EPP).
I suffer from a rare disease as well. its known as acute Intermittent Porphyria. Getting help was horrible due to lack of knowledge by doctors and nurses so awareness of such disease are so very important there Tinne is a champion
Tinne has raised the Belgian EPP-Patient organisation and this a fist big step in bringing EPP-patients together. She is ernomously driven and sacrifices her private life to fight for the rights of patients.
This painful disease needs more attention in the media, nearly no one knows about it. Tinne Cools deserves this award as a founder, she never gives up fighting for their rights.
Tinne Cools deserves this award. She never gives up fighting for their rights.
Dit is een rechtvaardige zaak
In deepest respect.