Category: Women Trailblazers
Tinne Cools
Tinne Cools
Founder
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
Vote for Tinne here
All Votes for Tinne Cools
Herbert Muhr
2020-03-06 09:42
Tinne has been fighting for years to get treatment for EPP
Jasmin Barman-Aksözen
2020-03-06 09:47
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.
cathy camertijn
2020-03-09 10:01
Tine has such a big heart. A worrier of what is right.
Stuart Stirling
2020-03-09 10:18
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!
Markus Dürr
2020-03-09 10:21
Because she was fighting for medical tratment for EPP, patients now can be trated. I thank her and all others for that hard work.
Stephan Murer
2020-03-09 10:24
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.
Marina Perin
2020-03-09 11:46
Tenho essa doença e sou obrigada a evitar o sol constantemente, isso é muito triste e limitante.
Charlotte Jacobs
2020-03-10 10:11
Ze wilt er alles aandoen om mensen met EPP een deftig leven te geven en dat vind ik ontzettend knap.
Anton
2020-03-10 10:11
Ze verdient om deze award te winnen
Olivier Cools
2020-03-10 10:11
Her dedication for this cause has earned my respect.
Cédric Verheyen
2020-03-10 10:16
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
2020-03-10 14:48
Great work Tine, pushing and fighting making the medication of this disease reimbursed in every country!
Anne Tellier
2020-03-10 21:03
She is a very authentic and altruïstic person with a big heart!
Kristin
2020-03-10 21:14
Knap!!
Danny de Roode
2020-03-10 21:30
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.
De Herdt
2020-03-11 08:27
It is great what Tinne does!
Ivo Goris
2020-03-11 10:22
She is the driving force for the Belgian Association of Erythropoetic Protoporphyria (EPP).
Dameco Lee
2020-03-11 23:04
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
Hilde Hutsebaut
2020-03-12 05:54
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.
Ann Luyten
2020-03-12 15:12
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.
Kristel Vercammen
2020-03-13 09:35
Tinne Cools deserves this award. She never gives up fighting for their rights.
Stefaan Raats
2020-03-13 10:33
Dit is een rechtvaardige zaak
Peter Vollens
2020-03-22 16:04
In deepest respect.
Xavier De Boever
2020-06-09 12:41
She's always fighting for the people/members with EPP, battling to achieve our goal... I hope one day we will all be able to experience the outdoors as normal people. Tinne, keep going and keep us informed!
Veronique Deseck
2020-06-09 12:49
Tinne zet zich belangeloos en met heel haar hart in voor de EPP-patiënten. Wij hebben heel veel bewondering voor haar omdat ze ondanks alle tegenkantingen en tegenslagen zich voor de volle 100% blijft inzetten! Daarom verdient ze het deze award te winnen.
Heidi Steyaert
2020-06-09 12:58
Ik heb zelf EPP.. En Tinne Cools heeft het opgenomen voor ons.. voor de mensen die al zolang met hun neus tegen de muur liepen.. zij heeft voor herkenning Van onze ziekte gezorgd!! Daar ben ik haar dankbaar voor!!
Antony Fearn
2020-06-09 14:11
The achievement of gaining recognition for EPP should not go unrecognised. Being able to communicate the true nature of a previously misunderstood (and in some arenas still misunderstood) ultra-rare condition with invisible but serious life limiting impact is a great achievement. Securing recognition of its impact from EMA regulators marked a critical moment in the treatment of EPP and EPP patients in Europe.
Le Moal
2020-06-09 14:12
Incredible power to fight for causes nobody seems to care about: rare diseases!
KRISTEN WHEEDEN
2020-06-09 14:21
Ms. Cools gives a voice to the rarest of the rare - people who may not be able to find their own way to stand up and be heard. We are proud of her work in Belgium where she is a true trailblazer.
Sean Hegarty
2020-06-09 14:22
Tinne effectively collaborates with the international Porphyria community of patient groups to bring about positive change to the quality of lives of people affected by EPP. The Porphyria community needs strong leaders like Tinne who courageously speak out, share their story, and work tirelessly for better outcomes for other people.
Liz Gill
2020-06-09 15:12
Tinne has been an advocate for EPP patients for many years and has been at the forefront of widening the understanding of EPP at the EMA and beyond. Without doubt, Tinne deserves recognition for her hard work and dedication.
Arlette
2020-06-09 16:08
Without her, there would be no Belgian EPP association.
Valerie Thewissen
2020-06-09 16:09
Voor iedereen die rechtstreeks of onrechtstreeks te maken heeft met EPP is dit een lijdzaam en vreselijk toezien! Het leven met EPP is hard, moeilijk en vooral ook heel erg pijnlijk. Op sociaal en psychologisch vlak een lijdensweg doordat EPP-patiënten vaak geïsoleerd raken wanneer net anderen van het samen buiten zijn kunnen genieten. Tinne zet EPP in de kijker en hopelijk krijgen wij zo meer ondersteuning en financiële hulp voor de medicatie voor deze patiënten!! Thank you Tinne!!!
Rocco Falchetto
2020-06-09 16:40
As a mother of an EPP patient, Tinne has advocated passionately and effectively for the needs of people affected by EPP and other porphyrias in the past and continues to do so admirably. She has given affected people a strong voice, helping address their urgent need for treatment. Way to go, Tinne!
AT
2020-06-09 16:47
For her enormous commitment to a better life for all EPP patients; for the reimbursement of medication; ....
Jeannie Reimer
2020-06-10 03:49
Tinne deserves this award for all of her hard work on behalf of people who suffer from the rare disease EPP.
Pascal Van Eeckhoorn
2020-06-10 13:42
Tinne has put EPP on the map in Belgium and opened doors for recognition of the disease.She is the voice of the Belgian EPP patients. Great respect Tinne Thanks!!!!!!!!
werner peinen
2020-06-10 17:03
Doorzetting in 't kwadraat
Sue Burrell
2020-06-10 21:14
Tinne is the most caring and aspiring woman. She is relentless in her fight for those affected by EPP and has been instrumental in changing patient lives by being a voice for those who cannot be heard! Not only in Belgium, but at the EMA which has had a positive ripple effect across the world! Tinne really is a true woman trailblazing warrior and it is a pleasure to be able to vote for her. I look forward to continuing our important work together as we continue to fight for patients affected by porphyria. Sue Burrell: President of the Global Porphyria Advocacy Coalition (GPAC)
Cordier Jacqueline
2020-06-12 11:40
Beste Tine van VZW EPP mogen wij u van ganser harte aanbevelen om deze Award te winnen JE VERDIENT HET DOOR DIK EN DUN
Marievoet Rina
2020-06-13 07:49
She did a good Job for Epp in Belgium
sabine Marievoet
2020-06-13 08:56
EPP is een zeldzame ziekte.Tinne zet zich ten volle in om bekendheid van de ziekte uit te dragen en brengt de leden van onze patientenvereninging samen om informatie uit te wisselen.
Didier Cornelis
2020-06-13 10:28
Het is ongelofelijk wat Tinne voor de patiënten met EPP doet! Mede dank zij haar niet aflatende inzet is het geneesmiddel Scenesse in Europa toegelaten door het EMA. Ze is de trekker van de Belgische EPP vereniging: organiseren evenementen, fundraising, contacten met stakeholders en de pers... Sterke intelligente vrouw met een warm hart en een grote belangeloze inzet voor het goede doel! Ze verdient dit echt!
Luc Nelis
2020-06-16 10:02
Zij is een ongelooflijk gedreven persoon en ze wil niet enkel voor haar zoon maar voor iedereen toegang tot goedgekeurde/betaalbare medicatie. De tijd en middelen die ze erin gestoken heeft zijn echt bewonderenswaardig.
Gert Eyskens
2020-06-17 05:28
She brings EPP under attention. With this she a support for many others.
annemie verlinden
2020-06-17 05:58
zij doet het omdat ook deze mensen zouden buiten kunnen komen
Nancy Kelders
2020-06-17 06:51
Because this people need help, my friend has epp and tinne still fight for them!
Zita Eyskens
2020-06-17 07:27
Top madam
De Smedt Hilde
2020-06-17 11:01
She is very devoted to the association. She is the liaison officer tot the Belgian government in order to obtain facilities for allthe EPP people . She has a great hart. We all would her to be the winner of this award.
Verbeek Michel
2020-06-18 06:28
Mooi initiatief !
Joaquin
2020-06-22 08:11
It is very important to communicate how difficult it is to live with a rare disease and even more when it is not perceived by society. Patients need support and groups that work every day to achieve a better quality of life for them, and that is what Tinne has been doing for years.
Guadalupe Lopez Otal
2020-06-23 09:50
Por ser presidenta de la Asociación de Porfiria y conocedora de las EERR
VERÓNICA CANO LATORRE
2020-06-23 12:05
I think his profile is great for homework
Rosi Parra
2020-06-23 14:52
think his profile is great for homework I am a member of the Spanish Association of Porphyria.
An Voets
2020-06-24 05:11
Geweldig, bewonderingswaardig en gedreven persoon. Zij is een grote steun voor velen. Top vrouw!
