APPES and CLAN EQUITY (ACE) WORKING GROUP
In late 2015 expressions of interest were sought from APPES members interested in participating in a new working group focused on redressing the inequities experienced by children and adolescents living with endocrine conditions in the Asia Pacific region. Nine APPES members from eight different countries responded, and on 18 November 2015 the inaugural meeting of the APPES CLAN Equity (ACE) Working Group was held via teleconference.
The ACE Working Group members elected to focus early efforts on a mapping exercise to ensure key priorities and vulnerable communities of our region were identified and to facilitate future monitoring and evaluation. In the interim, and based on previous consultation with APPES members by CLAN, an early focus on the following collaborative activities was agreed:
- Access to medicines and equipment – a strategic approach to improving access to medicines for children living with endocrine conditions in the region
- Education, research and advocacy – identification of existing educational resources that are available in different languages for different conditions in our region and making these readily available online
- Optimal medical management – explore opportunities to support expansion of newborn screening for congenital hypothyroidism in our region
- Encouragement of support groups – identification and promotion of existing endocrine communities, clubs and societies and
- Reduce financial burdens on families – clarification of government support and health insurance safety nets available to families in the region
Since the inaugural meeting the committee has expanded and now the ACE Working Group is currently made up of the following persons:
- Kate Armstrong, CLAN, Australia CHAIR
- Phil Bergman, Australia
- Jean Pierre Chanoine, GPED
- Maria Craig, Australia
- Jun Fen Fu, China
- Paul Hofman, New Zealand
- Reiko Horikawa, Japan
- Rajesh Joshi, India
- Rakesh Kumar, India
- Fauzia Mohsin, Bangladesh
- Craig Munns, Australia
- Jamal Raza, Pakistan
- Monique Stone, Australia
- Mya Sandar Thein, Myanmar
- Irfan Ullah, Oman
- Agustini Utari, Indonesia
- Dianne Webster, New Zealand
- Liu Xia, China
- Margaret Zacharin, Australia
DSD WORKING GROUP
More details to come
BONE WORKING GROUP
More details to come