KetoticHypoglycemiaInternational

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KetoticHypoglycemiaInternational

KetoticHypoglycemiaInternational

@ketotic_hypo

Ketotic Hypoglycemia International aims to be the leading community of families impacted by idiopathic ketotic hypoglycemia

Denmark Katılım Nisan 2020
772 Takip Edilen227 Takipçiler
KetoticHypoglycemiaInternational
KetoticHypoglycemiaInternational@ketotic_hypo·
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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KetoticHypoglycemiaInternational
KetoticHypoglycemiaInternational@ketotic_hypo·
Our amazing families are sharing a united message of love, hope and festive cheer this Holiday season! Thank you to the families who agreed to take part in our festive video! Happy Holidays from the team and the families behind KHI 💜💙
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EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
We are calling on the European Union to create a robust regulatory framework for transformative treatments through the Revision of the EU Regulation on Orphan Medicinal Products. Read more about how this could be done: 🔗 cutt.ly/yN2fxRD
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KetoticHypoglycemiaInternational
KetoticHypoglycemiaInternational@ketotic_hypo·
The Staff at KHI want to say a huge thank you two amazing kiddos who are part of one of our KHI families. Nate and Anders Blakey The boys have raised a whooping $505 for KHI!! They asked for donations instead of presents at their recent birthday party!! Well done boys!
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KetoticHypoglycemiaInternational
KetoticHypoglycemiaInternational@ketotic_hypo·
We are so happy with this article from @medtecheurope shedding light on life with idiopathic ketotic hypoglycemia 🫶💜💙 ! We guess it is particularly relevant to @AbbottNews, @dexcom, @EuropeanCommiss, @Europarl_EN and @eurordis too?
MedTech Europe@medtecheurope

Health data sharing has helped Danielle Drachmann and her family improve the management of ketotic hypoglycaemia, but research 🔬 on this rare condition is necessary, requiring patient data. Read more about her story here: bit.ly/3CF2tZe #DataForHealth #EHDS

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KetoticHypoglycemiaInternational
KetoticHypoglycemiaInternational@ketotic_hypo·
We are excited to share the dates for the 2023 Family Conference in KHI! Sept. 1-3, 2023 we will be bringing you our ever first hybrid conference! It will be both live-streamed content as we have had before and an in-person event taking place in Copenhagen. #KHI2023
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Thomas Kaarsted
Thomas Kaarsted@TKaarsted·
In Turku, Finland, with ⁦@AnneKOvergaard⁩ engaging researchers and the library in #citizenscience. Two days of talks, debate and workshops #sdgs 🇫🇮🦾
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KetoticHypoglycemiaInternational
KetoticHypoglycemiaInternational@ketotic_hypo·
On the initiative of a fierce danish KHI family, the first Ketotic hypoglycemia international get-together was hosted this weekend. The weekend was filled with laughter, dancing, playing, and tears. A whole weekend being amongst families facing some of the same struggles. 🥳🥳
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KetoticHypoglycemiaInternational
KetoticHypoglycemiaInternational@ketotic_hypo·
“Expert by necessity - not by choice”! So proud of our executive director @dani_drachmann advocating for political and European support to enable co-produced health research in rare diseases at the closing session of #ERCD2022 👏🏻 @eurordis @Europarl_EN
EURORDIS-Rare Diseases Europe@eurordis

How can we ensure the implementation of the Rare 2030 recommendations? For @dani_drachmann, the key to unlocking the potential of these policy recommendations is simple - through the partnership between experts & families of those affected by a rare disease. #ERCD2022

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EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
What a joy it was to welcome you, our 8️⃣0️⃣0️⃣+ guests and speakers, on Day 4 of our #ECRD journey. With your participation, the conference successfully finished all its main sessions. Now, take some time to recharge, and get ready for the last day of #ECRD2022, tomorrow at 2 pm!
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KetoticHypoglycemiaInternational
KetoticHypoglycemiaInternational@ketotic_hypo·
After receiving the diagnosis of KH-only GSD 9a doctors at the local hospital still failed to understand the care plan, causing situations where the mother had to convince them to NOT give her girl insulin during an attack of ketotic hypoglycemia. youtu.be/jlPFmfu_acE
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Keşfet

@drshahp @jaicontractor @CHCharityUK @congenitalhi @flanagan_se @uniofexeHLS @UniofExeter @Exeter_Diabetes