The World Albinism Alliance (WAA) is a newly registered not for profit association formed by representatives of albinism organisations from around the world, including:
– NOAH (National Organisation for Albinism and Hypopigmentation, USA)
– Albinism Fellowship of Australia
– Albinism Trust, New Zealand
– Under The Same Sun (Canada / Africa)
– TANA (The Albinism Alliance Group)
…..and many others
BACKGROUND TO THE WORLD ALBINISM ALLIANCE
Recognizing the inherent worth and importance of connecting all people with albinism across the globe, the World Albinism Alliance endeavours to unite existing, and assist in the creation of new, albinism organizations worldwide to: ensure that people with albinism are treated with dignity and respect according to the law, heritage and culture of their birth right consistent with the United Nations Universal Declaration of Human Rights and its Convention on the Rights of Persons with Disabilities; to provide complete and accurate information relative to albinism to those with the condition, medical professionals, educators and the public; and to promote scientific research to more fully understand and manage albinism. Wherever it is read nothing in this constitution shall alter the founders fundamental and enduring intention. World Albinism Alliance Inc has been established as a global entity following discussions consultations between a number of Albinism organizations around the world
On 27th August 2011, the decision was made to establish and register the entity in NSW Australia, The registration was finalized 30th May 2012, with Incorporation number INC9897392
The aims and objectives detailed of the World Albinism Alliance are:
• Educating People with Albinism
• Educating the General Public about albinism
• Educating Health Professionals about albinism
• Educating the educators about albinism
• Advocating for accurate portrayal of albinism in the public media
• Ensuring equity in Citizenship Rights for people with albinism
• Advancing Scientific Research into albinism
• Encouraging local albinism organizations
There are two forms of membership.
1. Full member is when a member has been nominated in writing by the management of a Registered Albinism Organisation as being one of up to four representatives of that Organisation within the WAA.
2. Associate member who is not a Full member of the WAA, including interested individuals and representatives of Unregistered Albinism Organizations
INTERNATIONAL ALBINISM AWARENESS DAY JUNE 13TH
Following the official ratification of the International Albinism Awareness Day (IAAD) as 13th June by the United Nations, another key role will be to communicate about and develop activities for this auspicious day.
While activity and progression of the WAA has been slow over the last year, it is the time to reignite the activities of this group.
NEXT WAA MEETING
We would like to advise that there is a planned meeting via Skype for the WAA to be held on 21st February 2015 at 08:00 (8am) Sydney time (please make time adjustments). If you are interested in attending, please email and advise of your Skype ID.
Many thanks once more for your interest and support.
Dr Shari Parker
JP FAFRM (RACP) MBBS (hons) BSc med (hons)
Acting President World Albinism Alliance
Secretary Albinism Fellowship of Australia
Personal mobile: +61 411 622 122
PO Box 20729 World Square NSW 2002 AUSTRALIA