IFSBH

The International Federation for Spina Bifida and Hydrocephalus (IF) is the worldwide umbrella organisation for Spina Bifida and Hydrocephalus associations

[IFSBH @ifsbh]

💙 There's still time to join the IF Siblings Day celebration!

📢 Share our toolkit on social media and don’t forget to tag us @ifsbh on Twitter, Facebook, and Instagram.
Use the hashtags: #IFSiblingsDay #SBHSiblings #SmileSiblings

👉 Toolkit: https://t.co/neNwhY6pIn

[IFSBH @ifsbh]

📣 Let’s celebrate IF Siblings Day together! 💙

📸 Don’t forget to send us your photo by April 1st to be featured!

👉 Download the toolkit https://t.co/neNwhY5RSP

#IFSiblingsDay #SBHSiblings #SmileSiblings

[IFSBH @ifsbh]

Beza Haile, Founder & Executive Director of HOPE - Spina Bifida and Hydrocephalus, will speaking at the N4G side-event!
📅 March 24, 2025 | 🕝 2:30 PM CET
📍 Civil Society Pavilion, Paris & Online
🔗 Watch the livestream here 👉https://t.co/zx5JZcf8xL

[FFI @FFINetwork]

Happy #WorldFlourDay! #LSFF of staple foods like wheat flour is a powerful + cost-effective tool to eliminate vitamin + mineral deficiencies + improve public health.

Help us celebrate by thanking a miller + sharing the importance of fortifying flour.

https://t.co/fkgCblDCka

[IFSBH @ifsbh]

1 day left until IF’s International Women’s Day Webinar where we will discuss how to #AccelerateAction .

Join us: https://t.co/B33LvbCXSr

#IWD2025 #AccelerateAction #SpinaBifida #Hydrocephalus #SBH #DisabilityRights #GenderEquality

[IFSBH @ifsbh]

2 days left until IF’s International Women’s Day Webinar where women disability activists from all over the globe will join forces on how to #AccelerateAction for the rights of women with disabilities facing multiple discrimination.

Register and join us: https://t.co/B33LvbDvHZ

[IFSBH @ifsbh]

ONE DAY TO GO!
On 3 March 2025, the world will be united to celebrate the World Birth Defects Day (WBDD)! This year’s theme is #EveryJourneyMatters emphasising that birth defects affect individuals, family, friends, and communities.
IF toolkit: https://t.co/xAefZ4FPFo

[IFSBH @ifsbh]

TWO DAYS TO GO!
Get ready to join us for the #WorldBDDay campaign on birth defects, preventive measures, and advancements in care and treatment.
Read more on IF website: https://t.co/m3qRJkPCCo
Download the IF Social Media toolkit: https://t.co/xAefZ4GnuW

#WorldBDDay #SBH

[IFSBH @ifsbh]

Every life is unique, just like every rare disease story! On #RareDiseaseDay, we stand together with our global #SBH community: https://t.co/fEwsl54pMo
✨What does rare mean to you? Share your story!
✨Co-signed the historic Kuala Lumpur Declaration: https://t.co/3YEVNToQQo

[IFSBH @ifsbh]

Save the dates and join us:
28/02 #RareDiseaseDay #PLWRD #Resolution4care
03/03 #WorldBDDay - Download IF toolkit: https://t.co/olNK7WphYB
07/03 IF #IWD2025 webinar- Register: https://t.co/b8i8UBEhc6 #AccelerateAction
08/03 #IWD2025 - Download IF toolkit: https://t.co/Ge1hSbsyfs

[IFSBH @ifsbh]

On @Rotary 's 120th anniversary, we are excited to launch our publication #ServiceClubs in Action for #SpinaBifida 👉 https://t.co/KoVaAuJV3s

#SBH #SiBIAM #fundacionporamor #DASH3300

[IFSBH @ifsbh]

📢 IF supports Rare Diseases International with the proposed WHA Resolution on #RareDiseases to be adopted during #WHA78 in May: https://t.co/TMcwNkNTyF The resolution underscores IF's priorities as per the recent Kuala Lumpur Declaration: https://t.co/3YEVNToj0Q

[IFSBH @ifsbh]

Be our Valentine - show us some ❤️
Donate monthly or just once 👉 https://t.co/y68JUgLr4H
Your support can make a meaningful difference in the lives of people with Spina Bifida and Hydrocephalus and their families worldwide! 🫶
#SpinaBifida #Hydrocephalus #SBH #DisabilityRights

[IFSBH @ifsbh]

📣 Just launched: New guidelines to optimise urological care 🩺💧 providing tools to:

➡️ Prevent renal damage
➡️ Improve bladder function
➡️ Improve the quality of life of children with #SBH and their families

Read more👉 https://t.co/SRwytmSjXl

#SpinaBifida #UrologyCare

[IFSBH @ifsbh]

IF welcomes the thematic pre-GDS summit webinar today organised by @IDA_CRPD_Forum @unprpd
@iddcconsortium to promote #HealthEquity for #PWD. Check IF's work on #HealthEquity in the historical Kuala Lumpur Declaration and co-sign: https://t.co/3YEVNToQQo @GDS_Disability #GDS2025

[IFSBH @ifsbh]

Join us next week for the EU-Ukraine webinar on spinal dysraphisms: Epidemiology of Spina Bifida in Ukraine and the prevention of #NTDs!

👥 Prof. Wladimir Wertelecki & Dr. Sylvia Roozen
📅 Thursday 6 February, 18:00 CET / 19:00 EE
📍 Online (Zoom)
🔗 https://t.co/GhLswxkapH

[IFSBH @ifsbh]

On #EducationDay, IF calls for a rights-based approach to inclusive education for students with disabilities, such as #SpinaBifida & #Hydrocephalus #SBH #JournéeDeLÉducation #inclusion

[IFSBH @ifsbh]

⏳1 hour to go until the #WFAAW25 webinar. 💬 Join the discussion and get or share expert advice on #FoodFortification policies for a healthier, stronger, and smarter future for all 👉 https://t.co/4HjI1pMqzM #FolicAcid #SpinaBifida #Hydrocephalus #SBH

[IFSBH @ifsbh]

Looking forward to welcoming you to tomorrow's #WFAAW25 webinar 'Prevention of Neural Tube Defects: Leaving No One Behind'!
Whoever hasn't registered yet can still do it here
👉 https://t.co/4HjI1pMYpk
Not to be missed! ✨
#FolicAcid #FoodFortification #SBH #LeaveNoOneBehind

[IFSBH @ifsbh]

#WFAAW25
Mandatory #FoodFortification with #FolicAcid is a cost-effective measure to reduce this risk of #NTDs 👉 https://t.co/LYqJluhFdl