Apardo summit 3

Lisa Foster was an invited speaker at the Asia Pacific Alliance of Rare Disease Organisations (APARDO) summit in Taiwan last month.

Here is Lisa’s report from the event:

Connection and cooperation are the themes from my experience at APARDO 2019. There was a genuine and whole-hearted approach shared by all participants. Threads of shared learnings, challenges and potential solutions combined to deliver a common fabric which bound us all together despite our geographical dispersion and diversities.

 My presentation explained the New Zealand context and the fact we do highlight our focus on empathy and kindness, and we have established a wellbeing budget therefore inclusion of people with rare disorders would be an expectation. Rare Disorders NZ’s role to amplify the collective voice, advocate for cohesive universal healthcare and offer a sense of belonging to those feeling isolated and alone was clarified. The August 2019 meeting I had with Hon David Clark, Minister of Health, focused on the hope for future ongoing conversation and corresponding collaborative actions including a future National Framework for Rare Disorders.

Other APARDO members offered their overviews of projects and successes. This provided awareness that we are all traveling this journey together in the ‘same collective boat’ but each at different destinations along the way and we all have something to contribute to the other - to share our strengths and learnings to ensure a smoother journey where possible. It also provided the opportunity to learn more about positive global advances such as the UN Political Declaration, which highlights those with rare diseases as a vulnerable population, and APEC Rare Disease Action Plan with its 30 targets and 10 pillars, offering real hope and a clear pathway for collaborative conversations within each of our individual countries. New Zealand has a central role as will host APEC 2021. This along with the Sustainable Development Goals (SDG’s) and the recent New Zealand’s People’s Report for the SDG’s offer direct acknowledgement and inclusion of those living with rare diseases.

During a formal dinner event I was lucky enough to meet with both the Vice-Minister of Health and Welfare for Taiwan, Huseh, Jui-Yuan, and the Chairman for National Health Insurance Committee Prof. Dr sc. Pol. Li-Fang Chou to discuss challenges of medicine access for people with rare disorders. They voiced their hopes for potential collective bargaining and even global initiatives to offer solutions for increasing challenges of resources and needs for modern medicines for people with rare disorders. They also explained that gene therapies and genomics will increase the demand and expectation and Taiwan wanted to be future-focused and prepared.    

Our New Zealand Ministry of Health has also instigated some multi-sectoral connections and possible partnerships across ministries with Rare Disorders NZ. This is an excellent first step in the journey to inclusion for people with rare disorders and ensuring no one is left behind.

The hope for holistic and equitable healthcare that includes those with rare diseases remains the mantra for all within APARDO and beyond.

Lisa Foster
Chief Executive

 

List of participants connected with: Chinese Organisation for Rare Disorders; President of Advocacy Service for Rare Diseases in Japan; Prof Matt Bellgard; APEC; Chairman for Taiwan Organisation for Disadvantaged Patients; Korean Organisation for Rare Diseases; Indian Organisation for Rare Disorders; Center for Rare Disorders China-Dolls; Thai Rare Disease Group, We Care Journey; SMA Malaysia; Indian Alliance of Patient Groups (Dakshayani and Amaravati Health and Education); Philippine Society for Orphan Disorders; Director of Esperantra and LAPO Peru; Secretariat for APEC Rare Disease Network; Spanish Federation; ALIBER.

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