World Albinism Alliance and International Albinism Awareness Day June 13^th 2015

The World Albinism Alliance (WAA) was formed in 2011 to bring together Albinism Societies from around the world. The WAA was established in 2012, founded on discussions dating back almost two decades. The WAA has over 40 active participants with representation from all of the world’s continents.

Albinism is a genetic condition affecting all peoples of the world. It is due to reduction of the pigment melanin. People with albinism (also known as “albinos”) have fair hair and skin and most are legally blind. People with albinism face misrepresentation and discrimination across the globe. The extent of the issues varies greatly, ranging from discrimination, bullying, and inaccurate representation in movies, through to heinous physical attacks and violence. Over 360 attacks on people with albinism have been documented in over 25 countries because our body parts are thought to bring good fortune and we are thought of as ghosts not human beings.

Recognising the inherent worth and importance of connecting all people with albinism across the globe, the WAA 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.

The WAA also aims to provide complete and accurate information about albinism to those with the condition, medical professionals, educators and the public; and to promote scientific research to more fully understand and manage albinism.

The WAA’s work to date has focused on establishing active dialogue and connection with albinism associations and working with the United Nations Human Rights Commission on its albinism awareness campaign. The WAA looks forward to working towards achieving our other goals over the coming years.

The World Albinism Alliance acknowledges, and strongly supports International Albinism Awareness Day (IAAD). IAAD was endorsed by the United Nations to be celebrated throughout the world on June 13^th each year. June 13^th is a significant date in the history of albinism, being the date of the United Nations’ adoption of an historic resolution recognising and addressing attacks and discrimination facing people with albinism. The WAA strongly acknowledges the work of Under The Same Sun in international albinism advocacy and values its partnership with this organisation.

The WAA strongly condemns all acts of inhumanity, intolerance or any other forms of discrimination to people with albinism around the world.

IAAD has been acknowledged through dozens of local gatherings throughout the world and has received extensive press coverage. Through local advocacy and media coverage, albinism issues have gained global awareness. IAAD has been a day of celebration, reflection and by people with albinism. This has been the first of many wonderful Albinism Awareness days to come.

Dr Shari Parker, President World Albinism Alliance

On behalf of all members of the World Albinism Alliance      www.worldalbinism.org

https://www.facebook.com/pages/World-Albinism-Alliance/252232734852471

doctor_shari@yahoo.com.au Personal mobile +61 411 622 122

The following is a list which has been compiled from various sources. If you know any additional organisations, please let us know! If there are any errors in the following list, please also let us know! Thankyou! Shari Parker president@worldalbinism.com

Membership Form WAA Version 2 PDF

Membership Form WAA Version 2 Word

Please read and complete the Application form ensuring all details are clear and legible.  On completion return the form and return to

The Secretary

World Albinism Alliance

P.O. Box 20729

World Square NSW 2002 AUSTRALIA

Or email to           president@worldalbinism.org

INTRODUTION

Recognizing the inherent worth and importance of connecting all people with albinism across the globe, the World Albinism Alliance Endeavour’s 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 27^th August 2011, the decision was made to establish and register the entity in NSW Australia. The registration was finalized 30^th May 2012, with Incorporation number INC9897392

The aims and objectives detailed of the World Albinism Alliance are:

1. Educating People with Albinism
2. Educating the General Public about albinism
3. Educating Health Professionals about albinism
4. Educating the educators about albinism
5. Advocating for accurate portrayal of albinism in the public media
6. Ensuring equity in Citizenship Rights for people with albinism
7. Advancing Scientific Research into albinism
8. Encouraging local albinism organizations

There are two forms of membership.

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.

Associate member are other interested individuals, and representatives of Unregistered Albinism Organizations.

 Membership fees – a donation equivalent to AU$20 (Australian Dollar) is suggested for membership. 

Donations can be deposited into the following account

• WORLD ALBINISM ALLIANCE INCORPORATED
• Account Number 431149245
• BSB 112 879

Please put your name as the reference for the deposit

You can view the World Albinism Alliance Constitution by clicking on the link below.

WAA constitution FINAL 23 APRIL 2012

INTRODUCTION
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.

Kind regards,

Dr Shari Parker
JP FAFRM (RACP) MBBS (hons) BSc med (hons)
Acting President World Albinism Alliance
Secretary Albinism Fellowship of Australia
president@worldalbinism.com
Personal mobile: +61 411 622 122

http://www.worldalbinism.org
PO Box 20729 World Square NSW 2002 AUSTRALIA