The World Spina Bifida and Hydrocephalus 2021 Conference

Brussels, October 26 2021

The World Spina Bifida and Hydrocephalus Day (WSBHD) main event, taking place on October 25 2021, was an inspiring moment of sharing across countries and continents.

Together with a panel of speakers and participants from all around the world, a rich and elaborate programme was established.

The IF President, Cato Lie, opened the event with a word of welcome and pointed out the importance of protecting the rights of individuals with Spina Bifida and Hydrocephalus (SBH) and called worldwide actors to: “Unlock Your Right to Health”. Cato Lie also highlighted the UN CRPD states that people with disabilities have the right to the highest attainable standard of health as per article 25.

Subsequently, the IF Secretary General Dr Sylvia Roozen, also chair of the WSBHD21 main event, welcomed speakers and participants. Dr Roozen reminded us that October is an  awareness month which serves to raise awareness about SBH, but also to advocate, promote the rights of persons with SBH and show the strength of the SBH community.

In the framework of the WSBHD21, a drawing contest was launched to call worldwide members to be creative on this years’ theme “Unlock Your Right to Health”. Dr Sylvia Roozen thanked all participants for their participation and talents. The winners of this contest are, from first to third place: Francisca Rojo Cano (24) and Emerson Balboa Guajardo (17) from Chile, and Abinav (9) from India.

These drawings have inspired three phone wallpapers which will be gifted to donors by the International Federation for Spina Bifida and Hydrocephalus to thank them for their support. You can still obtain one of the beautiful handcrafted and customised wallpapers by sending your donation, small or big. You can visit IF website here to know more about donations.

The panel of speakers was opened by Dr Santosh Karmarkar (Convener and Trustee, Spina Bifida Foundation, India). Dr Karmarkar presented a 25-year musical journey and the overview of the many players of an orchestra involved in multidisciplinary care for individuals with Spina Bifida and Hydrocephalus and their families. In fact, a full orchestra of key musicians such as urologist, fetal surgeon, nurse, and many more health professionals are needed to play in rhythm to treat patients with SBH. Integrated care, similar to a good musical concert, requires the determination of a conductor who has both the knowledge of each instrument and can bring the multidisciplinary orchestra together to provide optimal care. Dr Karmarkar brought attention to the missing players in multidisciplinary care and emphasised the importance of coordination between the players.

The second guest speaker of the conference was Ruth Nalugya (President of SHA-U, Uganda) who expanded on community building. One of the ways through which they work to unlock the right to health and build community, raise awareness and advocate is music. On this special day, SHA-U released a beautiful and touching Spina Bifida Anthem singed by Kerstin Blessing, a 9-year old girl with Spina Bifida and Hydrocephalus. The Anthem is available here.

The next presentation focused on a different angle, the one of building a strong network, more specifically between Latin-American countries. Federico Nuñez Perea (President of RENAPRED and RELAPRED, Mexico) presented on behalf of Elena Záppoli and gave insights into a strong community initiated by APEBI (Argentina) and born in 2013. This community is made up of individuals with Spina Bifida and Hydrocephalus, friends, families, healthcare professionals, politicians and sponsors and work on spreading awareness about the rights of persons with SBH. A key actor in building this network was the Ambassador Dr Oscar Laborde who brought together 1.200 civil society organisations. Among the constraints, economic, geographical, societal and cultural were identified. Federico Nuñez Perea presented an overview of the national SB/H organisations in Latin America, including Bolivia, Colombia, Costa Rica, Chile, Dominican Republic, Ecuador, Guatemala, Mexico, Nicaragua, Panama, Paraguay, Venezuela and Honduras.

The last but not least speaker of the day was Andrej Drdul (Co-founder and board member of the SBAH, Slovakia) who covered the concept of twinning experiences. He presented various twinning experiences between national disability associations across countries and continents. Twinning means inspiring and taking example on other organisations. Andrej Drdul gave an overview of different kinds of twinning such as summer camps for children with disabilities where children can connect and discover about other children with disabilities similar or different than themselves. Another example is the project “City for All” which brings together local citizens and to share a moment with individuals with Spina Bifida and see the city through their eyes. Then, “Fathers to Fathers” gives a chance to fathers of children with disabilities to share experiences and inspire each other’s. Similarly, “Women to Women” and “Siblings to Siblings” are other examples of support groups. Finally, “Young Ladies to Young Ladies” is a support project between ladies with SBH and ladies from orphanages; they help one another on different perspectives such as sharing experiences on taboo topics like sexuality. Andrej Drdul ended his speech by emphasising the importance of progress and development for individuals with Spina Bifida and Hydrocephalus to grow.

The International Federation for Spina Bifida and Hydrocephalus (IF) warmly thanks the panel of speakers from all over the world who shared their perspectives on this year’s theme “Unlock your Right to Health” through different angles. We learned on 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…

October is an awareness month and celebrations around the World Spina Bifida and Hydrocephalus Day continues! We invite you to join the WSBHD21 side-events, more information about these are available here. You can also visit the WSBHD official website to discover the history and activities from previous years’ here.

We are already looking forward to celebrating the World Spina Bifida and Hydrocephalus 2022 next year!

In the meantime, we invite you to re-watch the WSBHD21 conference here.

Watch below the video compilation of the World Spina Bifida and Hydrocephalus Day 2021: