Don’t Stop Research on Rare Diseases!

Reasons for signing

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Mark Little
6 years ago
The parliamentary stance on general data protection regulation with respect to health data is sheer madness

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Anita Kanitz
6 years ago
“A small change can make a big difference. You are the only one who can make our world a better place to inhabit. So, don’t be afraid to take a stand .”
― Ankita Singhal

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Josef Tolkner
6 years ago
Každý má právo na plnohodnotný život a je nesmysl chránit si osobní údaje, které jsou stejně jednoduše dohledatelné, pokud by mohly zavčasu pomoci druhým díky rozvoji vědy a výzkumu. Zvlášť v tomto případě vzácných dědičných onemocněních je sdílení dat důležité, protože i kdyby již nepomohly nám, jistě pomohou našim dětem.

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Florence Moore
6 years ago
Data protection and privacy are obviously HUGELY important issues and no pharmaceutical company should be allowed to profit from people's sensitive data without their consent. However, as long as consent is given (on an individual basis for each study/research project/request) for use of medical data in medical research, this could benefit those with rare disease greatly. As the petition states, by virtue of being a rare disease, there are few people out there from which to gather data and so if we want to develop drugs to help these people, the sharing of data across countries could be very helpful- especially when rare diseases are largely neglected when it comes to research funding that doesn’t come from the patient communities themselves.

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Kira Leith-Ross
6 years ago
I believe it's vital... Don't wait until a loved one needs it to react. It'll be too late !

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Clare Logan
6 years ago
I have seen the direct impact of rare disease research and the genuine improvement it can bring to the life of these overlooked patients.

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Piera Capra
6 years ago
Da anni chiedo aiuto per ricerche su terapia con collirio Eloisin in xeroftalmia

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Sanja Stevanovic
6 years ago
Im NET G2

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GIUSEPPINA LUCIA SELLITTI
6 years ago
PERCHè è IMPORTANTE CONOSCERE PER POI POTER CURARE E ASSISTERE I NOSTRI MALATTI

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Pedro José Ortega Barrado
7 years ago
I have a son with a rare illness. It is important for us to research on rare diseases.