Interview with Téa La, Community Development Officer for CLAN (Caring & Living As Neighbours)

At OIFE’s Annual General Assembly on June 10th, we were happy to announce that the OIFE Board has accepted the membership application from the NGO CLAN (Caring & Living as Neighbours), to become a supporting member of OIFE. CLAN is an Australian-based, not-for-profit, non-governmental organisation (NGO).

Tell us a bit about yourself!

Hello! My name is Téa, I am the Community Development Officer for CLAN (Caring & Living As Neighbours). My journey as an intern for CLAN first began with a focus on the Osteogenesis Imperfecta (OI) community in Fiji, Korea and Indonesia, but my work has since expanded to include other chronic health conditions of childhood (including Congenital Adrenal Hyperplasia (CAH), Type 1 Diabetes (T1D) and other non-communicable diseases (NCDs)). The heart-warming passion of families and children, the dedication of health professionals, and support from CLAN and partners has reaffirmed my career aspirations in the physiotherapy industry.

Can you tell us about CLAN?

CLAN, a non-governmental organisation (NGO) headquartered in Australia, is dedicated to optimising quality of life for children living with NCDs (non-communicable diseases) and other chronic health conditions in resource-poor settings, so they may grow to enjoy healthy and happy lives. We work in a range of countries around the world and with many different cultures. CLAN is privileged to have collaborated with OI communities in Fiji, Indonesia, Pakistan, and the Philippines.

In Indonesia I have been actively involved in supporting FOSTEO, the Indonesian OI community. CLAN’s efforts are informed by our Strategic Framework for Action which centres children and communities as a visual hub of focus for collaborative action around our Five Pillars: affordable access to essential medication and medical equipment; education, research and advocacy; optimisation of medical management; encouragement of family support groups; and reducing poverty and promoting financial independence.

The support and work we do is informed by the local needs and priorities of the children, families, and communities we work with. Over the years, CLAN has been fortunate to receive support from our partners and sponsors, and their donations continue to help us achieve our mission to redress health inequities. More information about CLAN and our Strategic Framework for Action can be found on our website.

How does CLAN benefit from OIFE as a member?

We are honoured to join OIFE as a supporting member. International collaboration, such as this, is crucial to effecting change for children living with OI. By bringing our experiences and resources together, we are better placed to strengthen communities and drive change to redress inequities. One example of this was our collective rights-based advocacy effort this year. With the amazing support from Jo Ragen and the International OI community, including OIFE, we were able to launch our OI Child-Friendly Rights Flyer on Wishbone Day 2023. The flyer supports OI advocacy efforts and helps children and young people living with OI better understand their basic human rights as declared under the United Nations Convention on the Rights of the Child. We are grateful for the collaborative efforts and support in the sharing of the flyer by OIFE. The flyer can be accessed here.

Can you tell us a bit about the situation of the children with OI in Indonesia?

The unprecedented COVID-19 pandemic and financial burdens placed on families had disrupted FOSTEO’s annual Wishbone Day (WBD) celebrations for 3 years. The FOSTEO community has expressed their desire to hold larger and more frequent events to both help strengthen the OI community’s bond and garner attention from the wider community to raise awareness. Affordability and accessibility of mobility aids and specialized health care remain key challenges facing families.

CLAN collaborated with FOSTEO in preparation of WBD 2023 celebrations in Indonesia. The organized event included an education seminar, Q&A session with specialist doctors, a fun painting session for the children, sharing session, and WBD-themed food and shirts. CLAN was proud to support FOSTEO in the event planning process, sharing of resources and the provision of a small grant to support their celebrations.

What are your plans for the future?

CLAN is proud to be part of the @MATES4Kids (Maximizing Access to Essential Supplies for Children) movement to reduce the preventable mortality associated with CAH by 30% by 2023, and contribute to efforts to achieve the United Nations’ Sustainable Development Goals (SDGs). By working with like-minded partners to develop a Community of Practice (CoP), champions from around the globe meet regularly to exchange knowledge, resources, and share experiences to scale action. More partnerships and funding to support these activities would help to further expand our efforts to reduce preventable mortality across other childhood NCDs such as OI.

CLAN continues to establish ongoing collaborative partnerships in efforts to optimize the quality of life of children living with OI, and promote awareness of their rights and needs. The OI Child-Friendly Rights Flyer (currently available in English, Indonesian and Korean) supports these advocacy efforts, and we look forward to working with partners to translate this and other resources into more languages in the future!

Watch Development Officer Téa La give an introduction to who CLAN is and what they do. The video was first shown on OIFE’s AGM on June 10th 2023.