Hello and welcome to the Asia Pacific Alliance of Rare Disease Organisations (APARDO).

 

As we embark on a new year, I am both optimistic and confident that APARDO will bring together rare disease organisations and be the representative voice of patients and families affected by rare diseases. As your elected representative, I commit myself to working with all stakeholders in pushing the boundaries and fulfilling our collective agendas and APARDO’s vision and objectives. On behalf of the elected directors of APARDO, I encourage you to take part in upcoming programs and initiatives and also to use APARDO to share information about your activities and developments in your country and/or disease group. This platform is a connecting hub that will allow us to learn from each other, advocate collectively and to build capability/capacity to improve access and quality of life.

 

APARDO is on the cusp of an exciting opportunity with the recent (November, 2018) Asia Pacific Economic Cooperation (APEC) endorsement of the Rare Disease Action Plan. The Plan identifies 10 key areas of policy and makes recommendations for their implementation by APEC Member Economies in an effort to improve the diagnosis, care and management of rare diseases. As one of the official partners of the LSIF Rare Disease Network, APARDO looks forward to partnering with members through 2019, and in the years ahead, enabling us to take an active role in helping our member countries to operationalize these recommendations.

 

At the same time, we are aware of the tremendous challenges we face in working towards mutual goals. Our organizational objectives and planned activities must be informed by and accommodate the staggered levels of development, maturity, and access to resources/support among various members. Such challenges highlight the critical importance of such alliance as APARDO. Therefore, one of our first steps will be to elicit your feedback toward developing a better understanding of the healthcare and support environment in each of our countries and a profile of the region. This upcoming initiative will also ask about your needs along various areas, including organizational management, stakeholder relations, and advocacy that will help us set the priorities for APARDO.

 

As we continue to develop our website, we will keep you posted on planned events/training as well updates and opportunities across our region.

 

I leave you with inspirational words of Ralph Waldo Emerson:

“To know even one life has breathed easier

because you have lived. This is to have succeeded.”

 

I’m excited to be on this journey with all of you, in the hope to make many lives breathe easier through the work that we do. I’m sure that our collective energy and initiative will make the difference we seek!

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Here’s to many good things to come,

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Durhane Wong-Rieger