IFSBH @ifsbh
The International Federation for Spina Bifida and Hydrocephalus (IF) is the worldwide umbrella organisation for Spina Bifida and Hydrocephalus associations ifglobal.org Brussels, Belgium Joined December 2009-
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Extended Abstract Deadline May 5 Time is ticking! ⏰ Only 5 days left to submit your abstract for the 30th International Conference on Spina Bifida and Hydrocephalus 2024. Submit your abstract by May 5th, 2024 here: sbhconference2024.com
🌟 A heartfelt THANK YOU to the SBH community for joining us in celebrating Siblings Day on April 10! 🌟 Together, we honored the unique bond shared among siblings with Spina Bifida and Hydrocephalus, showcasing the power of love, resilience, and unity!
Today the @Europarl_EN will vote on the #EUDisabilityCard. A great step in the right direction to ensure the #PwDs including people with #SBH in the EU can enjoy the freedom of movement promised to them in the treaties.
Recently the new chair of the youth group Kateryna Shcherbyna represented the youth group at the Youth Week event in the EU Parliament on April 12. Support the future journey of our SBH community!
🎉 Happy Siblings Day! 🎉 On this day we honour siblings with #SpinaBifida and #Hydrocephalus 😄🌈 Check out this inspiring example of sibling support and love! 🔗 ifglobal.org/events/sibling…
🎉 Happy Siblings Day! 🎉 On this day we honour siblings with #SpinaBifida and #Hydrocephalus 😄🌈 Check out this inspiring example of sibling support and love! 🔗 ifglobal.org/events/sibling…
🎉 Happy Siblings Day! 🎉 On this day we honour siblings with #SpinaBifida and #Hydrocephalus 😄🌈 Check out this inspiring example of sibling support and love! 🔗 ifglobal.org/events/sibling…
🎉 Happy Siblings Day! 🎉 On this day we honour siblings with #SpinaBifida and #Hydrocephalus 😄🌈 Check out this inspiring example of sibling support and love! 🔗 ifglobal.org/events/sibling…
😄🌈 It's IF’s Siblings Day! JOIN US! #IFSiblingsDay #SBHSiblings #SmileSiblings
On #IFSiblingsDay, we do not only celebrate the unique and special relationships of siblings with #SpinaBifida and #Hydrocephalus, we also take the opportunity to raise our voices to make change and guarantee #inclusion for persons with #SBH and improvement of their rights.
On IF’s Siblings Day we honour siblings with #SpinaBifida and #Hydrocephalus. JOIN US on April 10! 😄🌈 👉 Download the toolkit now: ifglobal.org/events/sibling… #IFSiblingsDay #SBHSiblings #SmileSiblings
☺️ Do you have siblings with #SpinaBifida and/or #Hydrocephalus? Would you like to express and show your love to the world and how strong is your bond? Take part in the #IFSiblingsDay today! Join here: ifglobal.org/events/sibling… Don't forget to tag @ifsbh in your posts 🎉
🙋Did you know the deadline is extended?🤩 The 30th International Conference welcomes you to join for a truly international discussion on the latest medical advances and scientific findings on topics in the field of SBH. Register to learn more: sbhconference2024.com/registration
🎉 2 WEEKS TO GO - The IF's Siblings Day is around the corner! On April 10 we will honour siblings with Spina Bifida and Hydrocephalus. For the toolkit and more instructions on how YOU can join see here: ifglobal.org/events/sibling… #SBHSiblings #SpinaBifida #Hydrocephalus
We have had several days of intensive meetings in Brussels on Disability Rights in the EU, while one of our leaders is trapped in her appartement due to a defective lift- bruzz.be/actua/mobilite…
Do you feel passionate about human rights, international solidarity, and building capacity for persons with spina bifida and hydrocephalus at @ifsbh? Don't miss the opportunity to send us your CV and motivation letter before April 1 ifglobal.org/news/vacancies/
Join an @ERN_eUROGEN, @EuRefNetwork, OMNI-Net Ukraine & @ifsbh webinar supported by @ESPUorg: 🖥 SBoD: Kidney Function in Myelomeningocele Children 👤 Michal Maternik @GUMedGdansk 📅 Thu 21 Mar, 1800 CET 🔗 bit.ly/ERNeUROGEN21Ma… #RareDisease #UroSoMe #PedUro #SoMe4PedSurg
🌟Today is the #IWD where we celebrate IF Champions who invest in women on behalf of the global SBH community ❤️ ➡ See IF advocate Papatya representing the voice of the global SBH community during the WHA76.19 side event: youtube.com/watch?v=Da5q7a… #IWD #IWD2024 #SBHWomen
🌟Today is the International Women's Day where IF celebrates IF Champions who invest in young women on behalf of the global SBH community ❤️ ➡ See what IF advocate Laura, has to say about creating an inclusive society for young persons: ifglobal.org/news/sdgsummit… #IWD #SBHWomen
𝐂𝐀𝐑𝐄𝐄𝐑 𝐎𝐏𝐏𝐎𝐑𝐓𝐔𝐍𝐈𝐓𝐘! @ifsbh is hiring for the following positions below: 💙 Program Manager (Part-time) 💙 Members Engagement Communications Coordinator (Full-time) Apply here: lnkd.in/eJNMPWAz
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20K Followers 801 Following Director @ONeillInstitute; O'Neill Chair in Global Health Law @GeorgetownLaw; Director @WHO Center on Global Health Law; Global Editor @JAMA_current; @theNASEMBNDMR Maladies Rares @BNDMR
1K Followers 130 Following Banque Nationale de Données Maladies Rares, un projet du Plan national maladies rares, financé par la Direction Générale de l'Offre de Soins.Anđela Radovanović @zena_od_kamena
143 Followers 191 Following Human rights & disability activist. MA student - Linguistics, Literature & Political Science. Poet. Translator. Proving myself right out of spite.Join an @ERN_eUROGEN, @EuRefNetwork, OMNI-Net Ukraine & @ifsbh webinar supported by @ESPUorg: 🖥 SBoD: Kidney Function in Myelomeningocele Children 👤 Michal Maternik @GUMedGdansk 📅 Thu 21 Mar, 1800 CET 🔗 bit.ly/ERNeUROGEN21Ma… #RareDisease #UroSoMe #PedUro #SoMe4PedSurg
Deal on #DisabilityCard🎉🎉🎉
An @ERN_eUROGEN, @ifsbh, OMNI-Net Ukraine & @ERNIthaca webinar: 🖥 #SBoD: Etiology, Epidemiology, Pathophysiology, Classification & Neurosurgery 👥 Giacomo Esposito & Timothée de Saint-Denis 📅 Thu 18 Jan, 1800 CET 🔗 bit.ly/ERNeUROGEN18Ja… #UroSoMe #PedUro #SoMe4PedSurg
Keeping up with the #EDPD2023 tradition! 9th time in a row and always equally excited to meet everyone!
There is no cure for #SBH, there is only prevention. #FoodFortification is a proven, cost-effective strategy to reach the world’s most vulnerable and prevent #SBH. #WSBHD23 @ifsbh PC: IFSBH
The #UNGA High-level meeting on universal health coverage is about to start. We call on leaders to ramp up their actions towards to make the #HealthForAll promise a reality!
Doe je mee aan de campagne voor Wereld Spina Bifida dag? Stuur jouw inzending voor 13 oktober in! #WSBHD23 #Accessibility4all
Are you ready to join the WSBHD23 🎥video, ✍️drawing & 📲picture contest on this year's theme: Accessibility for All? Check out this inspiring example from Jonatan in Norway! Submit your entry by October 13! Participate here:worldspinabifidahydrocephalusday.com/2023-theme #Accessibility4All #SBH
Our efforts payed off! Today the Commission came up with a solid proposal for a EU #DisabilityCard directive 🇪🇺 In the #EP we @GreensEFA will fight to make the text as strong as possible on transport & make sure it paves the way to access social services. #TheFutureIsAccessible
The EU is not the continent of free movement for persons with disabilities. We call for an EU Disability Card: ➡️common definition of disability ➡️free access to transport ➡️national benefits for leisure, sport & culture Join our call: act.greens-efa.eu/eu-disability-… #DisabilityPride
On our way towards real freedom of movement of all persons with disabilities!💚 We welcome the @EU_Commission's proposal for the #EUDisabilityCard. Next, we will work hard to ensure it paves the way for a long-term recognition of disability status & access to services.
We were invited for the press conference launching the proposal of the #EUDisabilityCard. Follow live: audiovisual.ec.europa.eu/en/ebs/live/1
Our family support group (Lagos centre) yesterday empowering families to deal with challenges that come with having #spinabifida #hydrocephalus.
In my last address to the #CRPD Committee, I reflect on #disability across the peace continuum, making international law less fragmented, transforming services for persons with disabilities & other priorities I undertook during my @SR_Disability mandate👇 media.un.org/en/asset/k16/k…
LIVE: @DrTedros’ remarks at the @UN Food Systems Summit Stocktaking Moment #UNFSS2023 x.com/i/broadcasts/1…
To improve care for complex conditions such as #spina bifida, exchange among experts from all fields involved together with patiens and their stakeholders @ifsbh is vital. There are so many aspects to be considered. Hope this will foster future collaboration.
Very interesting trans-ERN meeting organised in wonderful Krakow, it was a pleasure to discuss with colleagues from other specialties and countries, complex conditions and questions need more data and answers….
📢Big news from #WHA76📢 Member states have just adopted the resolution "Accelerating efforts for preventing #micronutrient deficiencies and their consequences, including spina bifida and other neural tube defects through safe and effective #foodfortification"! 👏🏿👏🏼👏🏾
📢 GAIN and partners are hosting a side event in concurrence with the #WHA76 on 25 May, where key stakeholders and experts from the field of nutrition and environment come together to discuss I-CAN, launched at #COP27. 🔗Register to watch the livestream: bit.ly/3pNHLmT
Gracias @Hispasat por hacerlo posible! 🙏🏼 #EstuAMEBATope 🔥🏀👩🦽🧑🦽
Tremendamente orgullosos de formar parte de este equipazo !!! ✌️ #basketball @FundacionEstu @AMEB_EB @MovistarEstu