Friends

Dear patients, we have learnt a lot from you and are always blown away by how you cope with life, don’t let it get you down, and achieve incredible things despite or even because of your disease. Thank you for being so open and sharing your stories with us. Thank you for every single conversation and for letting us work with you. Thank you for always showing us what the important things in life are.


‘YOU’RE FAST AND SMART.’

Stefanie

Head of Rare Diseases, Chiesi

‘YOU UNDERSTAND US AND KNOW
WHAT YOU’RE TALKING ABOUT…’

Malik

LHON, Generation Z

‘THANKS ALL FOR A VERY GOOD WORKSHOP TODAY. SO VALUABLE WITH ALL YOUR INPUT AND IDEAS.’

Monika

Executive Director of Dystonia Europe

‘ONCE AGAIN, IT WAS MOVING AND SO INSPIRING! THANK YOU FOR YOUR WONDERFUL WORK. IT PROVIDES EXACTLY THE RIGHT FRAMEWORK NEEDED FOR SUCH SENSITIVE WORK.’

Franziska

Lead Patient Service, Takeda

‘WITH GREAT SENSITIVITY, OPENNESS, AND THE
RIGHT DOSE OF HUMOUR, YOU MANAGE TO INVOLVE THOSE AFFECTED BY A DISEASE AND INSPIRE THEM TO SHARE THEIR EXPERIENCES. THAT’S WHAT MAKES YOU SO UNIQUE IN THE FIELD OF PATIENT ENGAGEMENT!’

Andrea

Senior Manager Patient Advocacy, Biogen

‘I REALLY LIKE DOING THINGS LIKE THIS.
THIS IS THE ONLY WAY WE CAN BE HELPED.
IT WAS ALSO A LOT OF FUN! IF YOU WANT TO
DO WORKSHOPS AGAIN, I’LL BE ONLY
TOO HAPPY TO TAKE PART AGAIN.’

Thomas

Fabry disease

‘MY SON TOLD ME ABOUT YOUR AMAZING MEETING. HE TALKED ABOUT YOU WITH SUCH ENTHUSIASM. I’M SO HAPPY FOR HIM. I’M WILLING TO HELP YOU IF I CAN.’

Jessica

Malik’s mum


AADC / OBESITY / ADPKD / ACROMEGALY / ALSTRÖM SYNDROME / ALPHA MANNOSIDOSIS / ALS / ALZHEIMER / ATTP / CAD / IBD / CERVICAL DYSTONIA / COVID-19 / CYSTINOSIS / DIABETES / DUCHENNE MUSCULAR DYSTROPHY / SBS / FOP / HAE / HYPOPARATHYROIDISM / INTERSTITIAL CYSTITIS / LHON / HEPATOCELLULAR CARCINOMA / LYMPHOMATOID PAPULOSIS / MALIGNANT MELANOMA / CROHN’S DISEASE / FABRY DISEASE / GAUCHER DISEASE / POMPE DISEASE / MPS 1 / MS / NET / RENAL CELL CARCINOMA / NEUROPATHIC PAIN / PERIANAL FISTULAS (CPAF) / PSORIASIS / SICKLE CELL DISEASE / SMA / SMALL FIBRE / SPASTICITY / STROKE / THROMBOSIS / PROSTATE CARCINOMA / LUPUS ERYTHEMATODES / CYSTIC FIBROSIS

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