Letter Policy Officer

MAIN ACHIEVEMENTS

Community Building

through members meetings in Europe, Africa and Americas region

Awareness

Raising

Awareness Raising

through four international awareness campaign

Advocacy

through 65CSW and 24th session of the committee CRPD

Quarter 1 Jan.-Mar.

Publications

of the youth report on sexual health

Inauguration

of IF international youth group with SBH

Twinning Opportunities

for women with SBH on equality, motherhood, sexuality

Individual Support

to IF members for their national activities such as the launch of the national patient registry together with ASBI Italy

Publications

of the IF annual report, statement “European Union Strategy for the Rights of Persons with Disabilities 2021 – 2030”

Advocacy

Partnership Strengthening

with ERN-ITHACA, WHO, RDI, IDA, European Commission outreach to MEPs following the publication of the IF statement on the new disability strategy; response to the European Disability Strategy

Quarter 2 Apr.-Jun.

Award

March

Anna Verster Scholarship

Awareness Raising Community Building

Awareness Raisingthrough four international awareness campaign through members meetings in Africa, Latin-America, Europe Training region; Smarter Futures

Opportunities partnership meetings; creative writing for IF members "Connecting with policy makers and using social media for SBH advocacy"; and a training seminar for millers in Egypt together with FFI as part of competition and meeting for and by youth on sexual health in collaboration with IF member Spina Bifida Foundation India the Smarter Futures partnership

Awareness Raising

through two awareness campaigns Awareness Raising

Quarter 3 Jul.-Sept.

Community Building

through IF member meetings, in collaboration with Spina Bifida India Foundation for a webinar on fetal surgery and the India Birth Defects Prevention Task Force

Knowledge Exchange and Twinning

through IF conference for persons with SBH on multidisciplinary care through four international awareness campaigns

Publications

of the IF statement on Covid-19; information package on EU and the UNCRPD reporting cycle

Inauguration

of IF as member of the European Commission Disability Platform

Community Building

through members meetings in Europe and Asia region

Training Opportunity

Awareness Raising

for youth “Human Rights and Advocacy Training Accessibility in Focus”

Quarter 4 Oct.-Dec.

Partnership Strengthening

with EDF, EPR, EASPD

International Solidarity

with partners and members through World Spina Bifida and Hydrocephalus Day (WSBHD) and its side events

Publications

of four IF statements on the EU reporting to CRPD, multidisciplinary care, ageing and sexuality, information package on CRPD; and two reports on mental health by the IF advisory groups on ageing and youth, and the mental health of youth with SBH and Smarter Futures cutsheet

HUMAN RIGHTS

LETTER POLICY OFFICER

The advancement and protection of the human rights of the SBH community permeates all of IF’s work. IF policy and advocacy activities in 2021 focussed on raising awareness of the rights and needs of the global SBH community, empowering IF members to further their national advocacy and working together to enact change.

These activities in 2021 resulted in the publications of several IF policy statements. These statements play a vital role in the policy and advocacy work of IF as they outline the challenges facing the SBH community and what IF and its member associations recommend to policy makers and other stakeholders to address those challenges. Some of the 2021 policy statements were published in reaction to external events, for example the COVID-19 pandemic or the European Union (EU) reporting to the Committee on the Rights of Persons with Disabilities. Such statements are an important tool for IF to advocate for the specific needs of the SBH community in context of such developments. Other statements such as ageing with spina bifida and hydrocephalus, on the other hand, were penned in response to feedback from IF members. Such publications contribute to the effort to raise awareness and push these topics higher up on the global political agenda. In these activities IF strives to bring the concerns and priorities from the local and national level to international attention. This is one example of how activities on the national level can have an impact on the international level.

Alongside the policy statements IF published a series of information packages. These information packages were created for IF members to provide them with key concepts of disability rights. Knowledge is empowerment and although today most people can expect to access a huge amount of information and data through a few clicks on the internet, to understand that information in the context of SBH advocacy still remains a challenge. In the IF information packages the IF team focused on providing not only an overview of the topic but also relating it back to national associations and individual activists.

What stands out when looking back at 2021 are the opportunities to interact with members through IF events and training as well as collaborations with the IF working groups for the preparation of policy statements. IF also had the opportunity to raise the visibility of the rights and needs of the SBH community through interactions with policy makers, international organisations and other stakeholders and by speaking at events such as the European Public Health Conference.

The important policy and advocacy work of IF aimed at human rights will be continued.

Hildur Önnudóttir, IF Policy Officer