The World Spina Bifida and Hydrocephalus Day 2021
Description
The International Federation for Spina Bifida and Hydrocephalus (IF) is looking forward to celebrating together with YOU the World Spina Bifida and Hydrocephalus Day (WSBHD) on October 25, 2021.
This year IF selected the theme “Unlock Your Right To Health” to bring attention to the rights of persons with disabilities as laid out in the UN Convention on the Rights of Persons with Disabilities (UNCRPD). It is important that individuals with SBH and their families are aware of their human rights as per article 25 of the UNCRPD. It is equally important for healthcare providers, professionals and policy makers to understand their obligations to the UNCRPD. Therefore, IF would like to take the opportunity to raise awareness and reach worldwide actors who could unlock the rights of individuals with Spina Bifida and Hydrocephalus on the World Spina Bifida and Hydrocephalus Day.
October Awareness Month
IF welcomes October 2021 as an awareness month during which various events and activities will take place around the World Spina Bifida and Hydrocephalus Day to which you are invited to take part.Â
Among other actions, IF developed and launched a social media toolkit which provides you with key information about the WSBHD including key messages, links, hashtags, infographics to download and share on your social media for an active campaign on this memorable day. Â
Main-event invitation and registration
IF invites you to attend the World Spina Bifida and Hydrocephalus Day’s main event on October 25 2021 from 3 PM to 4.30 PM (CEST) on the theme of “Unlock Your Right To Health”. This event will be divided into different chapters focusing on multiple aspects of unlocking the rights of individuals with SBH, such as the promotion and protection of the UNCRPD, multidisciplinary care, prevention, inclusion, need for networking, opportunity of twinning and community building. Â
Register to the WSBHD main event now!
Monday 25th October ¦ 3 pm – 4.30pm CEST:
Main event agenda  (click on the picture to see it in full format)
Side-events agenda
This year, IF and Member Associations are organising side-events to the WSBHD’s main event. These events target individuals with SBH, both youth and older persons, and any other stakeholders interested in SBH and in sharing experiences and seizing opportunities to meet one another.
You can find the agenda and more information on the side-events below, but also on the official WSBHD website here.
Please note that both website pages will be updated with registration links and further details in the upcoming weeks. For the most updated information, please check out the WSBHD’s official website. To be notified of the latest updates, we invite you to follow IF on social media.
If you have further questions, don’t hesitate to contact IF at [email protected]
| OctoberÂ
awareness month (Day/TIME CEST) |
Title of the side event | Organiser | Additional information |
| 15 Oct.
11PM |
(EN) Let’s talk about Rights to Health
(SP) Hablemos sobre los derechos de la salud |
FundaciĂłn MĂłnica Uribe Por Amor | Online event
Open to All Language: Spanish |
| 19 Oct.
4PM – 5.30PM |
From Traditional to Digital – Unlock Your Communication | IF Communication | All Communication Coordinators of IF Member Associations
Online event Language: English, Spanish |
| 21 Oct.
9.30AM |
(EN) Spina Bifida: Against a still too heavy health burden, prevention yet remains timid!Â
(FR) Spina Bifida : Face à un fardeau sanitaire encore lourd, la prévention reste encore timide ! |
ASBH | French Members
Hybrid event (online/in-person) Language: French |
| 22 Oct.
3PM – 4PM |
The South Asian Network SBH | South Asian Network | South Asian Network
Online event Language: English |
| 23 Oct. | Tea Time Get Together with SBH Mothers from South Africa | ASBAH-SA | Members from South Africa
In-person event |
| 24 Oct. | Awareness and Fundraising Musical Concert and the Launch of “The Spina Bifida Child” Book | SBF-India | All IF Members
Online event Language: Hindu |
| 25 Oct.
3PM – 4.30PM |
MAIN EVENT WSBHD21
Unlock Your Right To Health |
IF | Open to ALL
Online Language: English |
| 25 Oct. | APEBI Opening of a New House | APEBI | tbc |
| 25 Oct. | Spina Bifida and Hydrocephalus on TV – Unlock Your Right to Health | CU-SBH-NET | tbc |
| 25 Oct. | National Prevention Campaign 2021/2022: the importance of folic acid intake, nutrition and a healthy lifestyle | ASBIÂ | All IF MembersÂ
Online event Language: Italian |
| 25 Oct. | Launch of the new website specifically on Hydrocephalus in both English and French | SBHQuébec | Online event
Language: English, Italian |
| 25 Oct. | National webinar on Spina Bifida and Neurosurgery (“Prise en charge du Spina Bifida : Quelle place pour la neurochirurgie” in French) | APMBSBB | Local event (Algeria)
Online event Language: French |
| 26-27 Oct.
12PM – 2.30PM |
A national discussion on Spina Bifida & Hydrocephalus – Bridging the Gaps between Patients/families and Health
Care Providers/Professionals towards improving Treatment Outcomes among patients with SBH |
FFF-SBHAN | Members from Nigeria
Online event Language: English |
| 27 Oct.
3PM – 4.30PM |
Ageing well with Spina Bifida and Hydrocephalus | IF Working Group on Ageing with SBH | All ageing SBH community
Online event Language: English |
| 29 Oct.
2PM – 3 PM |
Digital Escape Room – Unlock Your Rights | IF International Youth Group SBH | All youth with SBH
Online event Language: English |
| 30 Oct.
10 AM – 4 PM |
Independence life with SBH start today | Slovak Association of Spina Bifida and/ or Hydrocephalus | Language: Slovak |
You can now check out news related to events and activities held on the occasion of the WSBHD21 here: https://www.worldspinabifidahydrocephalusday.com/activities-2021
