This happened today 👏🏻

“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…

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

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…

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

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 🫶

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

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

#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 MedTech Europe 's platform bit.ly/3CF2tZe #DataForHealth #EHDS

#IKHsuperheroes

My EURORDIS-Rare Diseases Europe 🫶

Wise words from Gözde Susuzlu Briggs EPF on early stage co-creation with patients. #EHDS #datasharing #RareDisease

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

"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! European Patients' Forum #selfmanagement

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

Publication alert: pos.sissa.it/418/083/pdf Interested in co-creation, ehealth solutions and working with older adults? Check it out! Ali Simon Danielle Drachmann @MacMunter Carolien Smits Vera Bulsink

RT MedTech Europe: 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 Danielle Drachmann's story and her views on the value of #DataForHealth: …

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!

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

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? Ali Simon Danielle Drachmann @MacMunter Care & Caring Jnl doi.org/10.1332/239788…