Leaving No Child Behind at the 65th Annual UNDPI/NGO Conference in New York

Leaving No Child Behind at the 65th Annual UNDPI/NGO Conference in New York

CLAN (Caring & Living As Neighbours) was proud to attend the 65th Annual United Nations Department of Public Information (UNDPI) Conference for NGOs (Non-Government Organisations) at UN headquarters from 27-29 August 2014 in New York. Titled “2015 and Beyond”, the conference was an opportunity for civil society from around the world to come together and contribute to a shared action agenda for future sustainable development.

As an Australian NGO officially associated with UNDPI/NGO, CLAN was thrilled to be accepted to host a Workshop at the conference. Held in the North Lawn Building on 28 August, CLAN’s workshop was entitled Empowering Young People to Enjoy Healthy Lives - A Focus on NCDs and Collaborative Action by Civil Society in the Post 2015 Agenda. With thanks to generous funding support from the American Cancer Society (ACS), CLAN was able to harness this unique opportunity to advocate for children, adolescents and NCDs within the post-2015 discourse.

Moderated by Dr Kate Armstrong (President of CLAN), the workshop featured five incredible speakers -  Seun Adebiyi, Laura Musambayi, Jamal Raza, Maisha Hutton and Rose Rodas – each offering a perspective on the challenges faced by children and adolescents who are living with Non-Communicable Diseases (NCDs) and other chronic health conditions in low-and-middle-income countries (LMICs). Ranging from the personal, to the national, regional and then global focus, the panelists each inspired and informed a captivated audience:

  • Seun Adebiyi shared his personal story as a young Nigerian man striving to beat leukaemia and lymphoma, committed not just to help himself survive a deadly NCD (Non-Communicable Disease), but also strive to establish a bone marrow registry that would make it possible for others to live also and work with others such as the American Cancer Society (ACS – one of the largest NGOs in the USA) and Young Professionals Chronic Disease Network (YPCDN – a global movement for action against the injustice of NCDs).
  • Dr Laura Musambayi from Kenya shared her experiences as a young woman living with a little known NCD in a low-income country; her efforts to establish Kenya’s first Multiple Sclerosis Society and from there her work with CLAN to help start the country’s first ever Rheumatic Heart Disease Community so that the many children living with this neglected NCD might find the emotional, physical and material support needed to enjoy the highest quality of life possible.
  • Dr Jamal Raza spoke powerfully about his experiences at the frontline of child health care in Pakistan. His unique perspective as both the Director of one of his country’s largest children’s hospitals and also as the founder of Atfaal Welfare Society (AWS - an NGO committed to helping children living with chronic health conditions in Pakistan) reinforced the vital role governments must play in promoting and protecting the rights of all young people so that no child is left behind.
  • Maisha Hutton shared her insights from working with Healthy Caribbean Coalition (HCC – the largest coalition of civil society voices dealing with NCDs across the 20 countries in the Caribbean) and brought home the power that civil society actors have to effect change when we all work together and empower youth voices to stand tall and speak loud.
  • Rose Rodas then shifted our thinking from a regional to global focus, emphasising the vital importance of civil society coming together internationally to ensure a life-course approach to NCDs – and in particular the voices of young people – is not forgotten as the world considers key priorities within the post 2015 agenda. Encouragingly, UN agencies such as UNICEF are now leading the way, working in partnership with NCD Child (a global coalition committed to promoting children and adolescents within the global NCD, health and development discourse) around the inclusion of a Healthy Living Chapter dealing with NCDs in the flagship UNICEF publication Facts For Life.


Active audience participation was a highlight of the workshop, with special thanks going to Suleika Jaouad (cancer survivor and Emmy-award winning New York Times columnist) for sharing her inspirational insights around the impact on young people of a “Life Interrupted” by NCDs. It was fantastic to launch YPCDN’s NCD+ (NCD Positive) vine campaign – please accept the challenge and share in 6 seconds why YOU are NCD+!! – and everyone looked fantastic in their free white “NCD+” t-shirts!

CLAN was immensely proud to use this event to launch a new publication titled “Leave No Child Behind”, and we encourage everyone to read these inspirational stories and find ways to share your OWN stories about life for children and adolescents living with NCDs around the world… Stories are powerful… We need to raise the voices of those who are too rarely heard… As Suleika reminded us all, we must go to where the silence is…

In the afternoon following CLAN’s workshop UNICEF and NCD Child co-hosted a consultation session for civil society around the development of a chapter on Healthy Living and NCDs that will be considered for inclusion within UNICEF’s flagship publication Facts For Life.

CLAN was thrilled that the final UNDPI/NGO Conference Declaration and Resource Document were strengthened in their final draft by the specific mention of child rights; the inclusion of a call for Universal Health Coverage for all; and a call to focus on NCDs within post-2015 agenda. We believe these language changes will continue to support the ongoing collaborative advocacy efforts of the broader NCD Community.

In closing, there are many to thank for making the CLAN’s involvement in the 65th Annual UNDPI/NGO Conference a success. Indeed, this entire event would not have been possible without the collaborative efforts of multiple organizations and individuals, and CLAN sincerely thanks the teams at the American Cancer Society (ACS), Healthy Caribbean Coalition, Atfaal Welfare Society, NCD Child, UNICEF, the American Academy of Pediatrics, Young Professionals Chronic Disease Network, Einstein College of Medicine, Three Stories Consulting and CLAN’s many grassroots communities internationally for their contributions in particular.

CLAN would like to dedicate our participation in the 65th Annual UNDPI/NGO Conference to the memory of  Nguyễn Xuân Đoàn, inaugural President of Vietnam's first Duchenne Muscular Dystrophy Club. His story is included in "Leave No Child Behind".
Doan was an inspiration to all, and worked tirelessly towards the goal of leaving no child behind.

#UNNGO2014   #YouthVoices   #NCDs   #NCD+

“Going to where the silence is. That is the responsibility of a journalist: giving a voice to those who have been forgotten, forsaken, and beaten down by the powerful.” Amy Goodman