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ACTIVITIES 2021

The World Spina Bifida and Hydrocephalus Day (WSBHD), taking place on October 25 2021, was an inspiring moment of sharing across countries and continents both digitally and in-person. 

 

On this day, the International Federation for Spina Bifida and Hydrocephalus (IF) together with worldwide members led an impactful awareness raising campaign on social media.

 

IF Member Associations set examples of successful and diverse campaigns such as advocacy activities on social media, advocacy in national parliaments, musical concerts, local conferences with healthcare professionals, experts and persons with Spina Bifida and/or Hydrocephalus and their families. 

This years’ theme being “Unlock Your Right to Health” an emphasis was made by all

Members in advocating and unlocking the rights to health of persons with SBH because

SBH rights are human rights.

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WSBHD21 Drawing Contest

This year, a drawing contest was launched for WSBHD21! Congratulations to Francisca Rojo Cano (24) from Chile who won the first prize of the contest, Emerson Balboa Guajardo (17) from Chile who won the second prize and S. Abinav (9) from India who won the third prize. Thank you to all participants for their creativeness and participation!

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WSBHD21 Conference

The World Spina Bifida and Hydrocephalus 2021 main event organised by the International Federation for Spina Bifida and Hydrocephalus (IF) was an enriching experience thanks to the many actors who took part in it. Indeed, together with a panel of speakers and participants from all around the world, a rich and elaborate programme was established. IF warmly thanks them for sharing their perspectives on this year’s theme “Unlock your Right to Health” through different angles. We learned about the need of an orchestra consisting of many players; community building through a very special musical contribution; the need for networking across countries; and how countries can support other countries through the concept of twinning… 

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WSBHD21 Movie

The World Spina Bifida and Hydrocephalus 2021 Movie was launched on October 25 2021. This video includes the WSBHD timeline and messages from IF Members from all around the world!

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Spina Bifida Anthem 

Listen to the Spina Bifida Anthem launched by IF Member Association SHA-U (Uganda) on the World Spina Bifida and Hydrocephalus Day here.

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IF side-event "From Traditional to Digital: Unlock Your Digital Communication"

This exclusive event for Member Associations’ Communications persons was organised on October 19th, 2021.

The panel of speakers together with participants from all around the world shared their experiences and strategies in digital communication. This event was a truly inspiring moment of solidarity between IF Members through sharing and learning from one another. 

You can read more detailed information about this on IF’s website here.

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IF side-event "Ageing Well with Spina Bifida and Hydrocephalus"

On October 27th 2021, the IF Working Group on Ageing held the “Ageing Well with Spina Bifida and Hydrocephalus” side-event to celebrate the World Spina Bifida and Hydrocephalus Day 2021. Speakers shared their personal experiences on different aspects of living with Spina Bifida and/or Hydrocephalus. You can read more about the heart-touching testimonies here.

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IF side-event "Digital Escape Room - Unlock Your Rights"

On October 29th, to celebrate the World Spina Bifida and Hydrocephalus Day, the IF International Youth Group held the “Digital Escape Room - Unlock Your Right to Health” side-event. The youth community participated in the game and learned about the UNCRPD. They answered a number of questions and solved clues for an allotted time! The first team to solve the questions won the game! Congratulations to Rereloluwa Jesulayomi, Matthieu Loizelet, Rui Pedro Ribeiro Gaspar, Marcus Ward. 

You can read more detailed information about this side-event on the IF website here.

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(EN) Let’s talk about Rights to Health -

(SP) Hablemos sobre los derechos de la salud

On Friday 15 October, Fundación Mónica Uribe Por Amor (Colombia) held a talk on the right to health in collaboration with Carlos Jaramillo, lawyer of the Disability Unit of the city of Medellín - Antioquia. 
This meeting was held at 4:00 in the afternoon virtually through the Zoom platform. The lawyer gave recommendations to members according to their situations.

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ASBH Video Compilation

To celebrate this special day, IF Member ASBH (France) shared the 2021 edition of the video clip they traditionally prepare with contributions from their members each year on October 25th. 

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SBF India Gave a Special Musical Concert

IF Member Association in India, Spina Bifida Foundation, held a special music concert on 31st October 2021 on the occasion of the World Spina Bifida and Hydrocephalus Day 2021.

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SIBIAM's Talent Event

On Friday 30th of October, IF Member Association in Malaysia, SIBIAM, an online event where members could present their talents such as drawing skills, singing and dancing with some prizes as rewards!

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More will come...

Stay tuned for more news!

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FFF - SBHAN Held a Multidisciplinary National Discussion on SBH in Nigeria 

ASBI Launched a National Prevention Campaign 2021-2022 in Italia on October 25 2021 in collaboration with the Higher Health Institute.

ASBAH-SA Organised Multiple Activities in South Africa on the occasion of the WSBHD21

On October 27th, Festus Fajemilo Foundation (FFF) and Spina Bifida Hydrocephalus Association in Nigeria (SBHAN) jointly organised a multidisciplinary “National Discussion on Spina Bifida and Hydrocephalus in Nigeria” to commemorate the World Spina Bifida and Hydrocephalus Day (WSBHD).

"I take folic, do you? The importance of folic acid, nutrition and a healthy lifestyle",

this campaign aims at raising awareness on the importance of food, knowledge of raw materials and their use. On October 25, ASBI presented the first activity of the Campaign, the illustrated calendar 2022, that aims to give tips and be informative about the richest fruits and vegetables in folate.

Learn more about ASBI's campaign here.

ASBAH-SA started celebrations on October 6 by distributing party packets at the Spina Bifida Clinics every Wednesdays during the month. On October 11, the SBH Clinic distributed gift bags to patients and staff as rewards. Last but not least, a tea time was organised on October 23th with mothers of children with SBH during which Zubeida Toefy and Rozanne Bihl delivered a speech about SBH awareness at the SBH Clinic.