Danielle Drachmann @dani_drachmann

Executive Director at @ketotic_hypo / EHP @healthparl / Patient Representative at @EMA_News ketotichypoglycemia.org Denmark Joined April 2020

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681
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860

Yvonne Prinzellner (she/her) @prinzellner

2 years ago

New publication: Who does (informal) care work and how does it impact gender equality? Our new paper on the topic: Care-life balance: a new normal for men too? @TheAliSimon @dani_drachmann @MacMunter @IJCCjournal doi.org/10.1332/239788…

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EURORDIS-Rare Diseases Europe @eurordis

2 years ago

#TakeoverTuesday! My name is Danielle and after giving birth to two children with pathological idiopathic ketotic hypoglycemia (IKH), I co-founded the global organisation @ketotic_hypo (KHI). #raredisease #ketotichypoglycemia #KHI #idiopathicketotichypoglycemia #IKH #KH

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KetoticHypoglycemiaInternational @ketotic_hypo

3 years ago

On February 18th, it is Ketotic Hypoglycemia awareness day brought to you by KHI. Over the next few weeks we are going to be sharing different resources and ideas to give awareness. Raising awareness of rare diseases is an incredibly important task - We hope you can join us!

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Piet Verhoeve @pverhoev

3 years ago

RT @medtecheurope: Rare disease patients are set to greatly benefit from available #healthdata that can be used for #research 🔬 such as for developing key medical devices. Read more about @dani_drachmann's story and her views on the value of #DataForHealth: …

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Yvonne Prinzellner (she/her) @prinzellner

3 years ago

Publication alert: pos.sissa.it/418/083/pdf Interested in co-creation, ehealth solutions and working with older adults? Check it out! @TheAliSimon @dani_drachmann @MacMunter @Carolien_Smits @vebulsink

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Danielle Drachmann @dani_drachmann

3 years ago

Silence on my part, as I recently welcomed my baby daughter, Siennah 🎀 #newborn

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Ingrid @MissIngridW

3 years ago

"Patients need to be involved in decision-making as equal collaborators" - and with that we concluded the first day of the #COMPAREUFinalConference in Brussels yesterday. Join us for Day 2! @eupatientsforum #selfmanagement

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MedTech Europe @medtecheurope

3 years ago

Creation of #healthdata registries for #rarediseases must be a top priority to drive ❣️ #patient-driven #research 🔬 Read @dani_drachmann's story and take on the future #EHDS bit.ly/3DvQG0N #DataForHealth

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Danielle Drachmann @dani_drachmann

3 years ago

Wise words from @GozdeBriggs EPF on early stage co-creation with patients. #EHDS #datasharing #RareDisease

European Patients' Forum @eupatientsforum

3 years ago

Wise words from @GozdeBriggs EPF on early stage co-creation with patients. #EHDS #datasharing #RareDisease

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Danielle Drachmann @dani_drachmann

3 years ago

My @eurordis 🫶

EURORDIS-Rare Diseases Europe @eurordis

3 years ago

My @eurordis 🫶

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Danielle Drachmann @dani_drachmann

3 years ago

#IKHsuperheroes

KetoticHypoglycemiaInternational @ketotic_hypo

3 years ago

#IKHsuperheroes

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Danielle Drachmann @dani_drachmann

3 years ago

#Healthdata sharing has been instrumental for the daily management of ketotic hypoglycemia in my family, but more research and patient data are urgently needed. Read my story and my take on the future on @medtecheurope 's platform bit.ly/3CF2tZe #DataForHealth #EHDS

MedTech Europe @medtecheurope

3 years ago

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European Patients' Forum @eupatientsforum

3 years ago

💊JUST IN – EPF President Marco Greco: “#Patientorganisations must be involved as policy partners.” Clear words at today’s @LivePOLITICO on #affordablemedicines. Did you follow the event today? Join us in the conversation on #protectingmedicines.

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Danielle Drachmann @dani_drachmann

3 years ago

Okay. Admitted…. Being mentioned in a post by @eurordis where they cite @UrsulavonderLe3, President of the @EU_Commission, made my day 🌈 !! #starstruck

EURORDIS-Rare Diseases Europe @eurordis

3 years ago

Okay. Admitted…. Being mentioned in a post by @eurordis where they cite @UrsulavonderLe3, President of the @EU_Commission, made my day 🌈 !! #starstruck

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Danielle Drachmann @dani_drachmann

3 years ago

Today I spoke at the Caring for Rare Conference arranged by NORBS - National Organisation for Rare Diseases of Serbia. It was an honor to be invited to speak about my way into patient advocacy, and join the “Call to Action” panel discussion 🫶

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NORBS @retkebolesti

3 years ago

And the last session of this years #caring4rare conference goes to most important topic "Patient Advocacy: Call to Action"! #retkebolesti #caring4rare #rarediseases

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Lund Centre for the History of Knowledge (LUCK) @nhknowledge

3 years ago

Online seminar 12 Sept. 13.15–15.00: “A Citizen Science Project on Historical Experiences of the Family Revolution (c. 1960–1990)” LUCK’s seminar series this autumn begins with this online gathering. Welcome! newhistoryofknowledge.com/2022/08/26/sem…

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Thomas Kaarsted @TKaarsted

3 years ago

In Turku, Finland, with ⁦@AnneKOvergaard⁩ engaging researchers and the library in #citizenscience. Two days of talks, debate and workshops #sdgs 🇫🇮🦾

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Danielle Drachmann @dani_drachmann

3 years ago

“When my children grow up, and they ask me, why I was so absent (which I am sure they will) I will be able to show them the award, and tell them that I did absolutely everything I could to find a cure for them” So grateful to @MacMunter for nominating me eurordis.org/celebrating-ou…