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

World Albinism Alliance and International Albinism Awareness Day June 13th 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 13th each year. June 13th 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

Albinism Associations from around the world

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

Association Country in which it works? Website
4As-Associação de Apoio de Albinos de Angola Angola https://www.facebook.com/pages/4As-Associa%C3%A7%C3%A3o-de-Apoio-de-Albinos-de-Angola/513234915423327?sk=timeline&ref=page_internal
ABIPA Burundi
Action pour la protection et l’intégration des personnes albinos (APIDA) Congo, The Democratic Republic of
Adventist Development & Relief Agency (ADRA) Tanzania Tanzania https://www.facebook.com/TASTZ+B30C31A30:C32A30:C32
Africa Albino Foundation Uganda (AAFU) Uganda http://albinofoundationuganda.wordpress.com/about/
African Calabash Volunteer Ghana http://www.africancalabashvolunteer.org/
Albinism Empowerment Network (Kenya) Kenya
Albinism Fellowship of Australia Australia www.albinismaustralia.org
Albinism Fellowship UK and Ireland United Kingdom and Ireland www.albinism.org.uk
Albinism Foundation of East Africa (AFEA) East Africa / Kenya http://afea.or.ke/author/afea/
Albinism Society of Kenya (ASK) Kenya http://albinismsocietyofkenya.com/
Albinism Society of South Africa (ASSA) South Africa http://www.albinism.org.za/
Albinism Trust New Zealand www.albinism.org.nz
Albinismo Eu International
Albinismus (Czeck) Czech Republic http://albinismus.cz/index.php
ALBINIT Italy www.albinit.org
Albinizm Dernegi, Turkiye Turkey http://albinizm.org.tr/
Albino Savers Association, Sierra Leone (ASA-SL) Sierra Leone http://www.albinosaversl.com/375762985
Albinos Sand frontiere (ASF) Burundi http://www.asf-awb.org
Albinos sans Frontieres Congo, The Democratic Republic of
Albinosi (Poland) Poland albinosi.org.pl
Alliance Nationaleour la Promotion a la reinsertion des Albinos au Senegal (ANPRAS) Senegal
Amizero Association Rwanda
ANIDA Cameroon http://www.anida.fr/l-association/
Asante Mariamu Tanzania / US www.asante-mariamu.org
Asociation de Ayuda a personas con albinismo (ALBA) Spain www.albinismo.es
Associacao das Pessoas com Albinismo na Bahia (APALBA – Albinos Da Bahia ) Brazil http://www.apalba.org.br/
Association des Hommes de bonnes Volontes Pour Le Development Benin
Association mondiale pour la défense des intérêts et la solidarité des albinos (ASMODISA) Cameroon
Association nationale des Albinos de Côte d’Ivoire Ivory Coast
Association Nationale des Albinos du Sénégal (ANAS) Senegal albinossenegal.blogspot.com/
Association nationale des Albinos du Togo Toga
Association nationale pour l’intégration des personnes albinos (ANIPA) Burkina Faso http://www.burkinafaso-cotedazur.org/albinisme
Association of Gambian Albinos Gambia http://albinismgambia.org/, https://www.facebook.com/pages/Association-of-Gambian-Albinos/224618174399800
Association of Handicapped Albino Youths of Cameroon and Africa Cameroon
Association of People with Albinism in Malawi (APAM) Malawi https://www.facebook.com/AlbinismInMalawiApam
Association pour la Protection et le Développement de la Personne Albinos (APRODEPA) Congo, The Democratic Republic of aprodepa.over-blog.com/
Cercle d’entraide aux albinos malvoyants (CEAM), Circle of assistance to visually impaired albino Togo
China Albinism Society China http://albinism.org.cn/
Clarence Sebastian Foundation in Samoa Samoa http://clarencesebastianfoundation.yolasite.com/
Confédération nationale des Albinos de Guinée Guinea
Contactgroep Albinisme Netherlands http://www.angelfire.com/de/albinisme/
Danish Association for Albinism (DFFA) Denmark www.albinisme.dk
Ecran Total Cameroon http://www.ecran-total.org/english-page/
Fiji Society for the Blind Fiji https://www.facebook.com/FijiSocietyForTheBlind
Foundation Mwinmba Texas Congo, The Democratic Republic of http://www.albinosfmt.com/
Gender Equality and Women Empowerment for Development Uganda www.gwefode.org
Genespoir – Association Française des Albinismes France www.genespoir.org/
Ghana Association of Persons with Albinism (GAPA) Ghana http://www.gapagh.org/
Good Hope Star Foundation Tanzania
Healthy Skin Fiji Fiji http://www.healthyskinfiji.com.au/
Hemfa Tanzania Tanzania http://hemfatz.blogspot.com.au/2014_07_01_archive.html
Hermansky-Pudlak Syndrome Network United States http://www.hpsnetwork.org/en/contact-us
Human Health Aid Burundi (HHA – Burundi) Burundi http://humanhealthaid.jimdo.com/
Human Rights Media Centre, Albinism Anti-discrimination project South Africa
International Federation of People with Albinism and Blindness South Africa http://www.ifpab.co.za/about_us.php
International Foundation for Dermatology United Kingdom / Africa http://www.ifd.org
Japanese Albinism Network Japan http://www.albinism.jp/
Jeevan (life)  / Albinism India Group India www.jeevanonline.org
Kenya Albino Child Support (KACSU) Kenya http://www.kacsu.org/
KGRECO Tanzania
Kisii County People with albinism (KICOPWA) Kenya
Kuala Lumpur and Selangor Albinism Association (KLSAA) Malaysia Kuala Lumpur and Selangor Albinism Association
La Bien-être des Albinos de Côte d’Ivoire (BEDA-CI) Ivory Coast http://ongbedacotedivoire.org/
Liberia Albino Society Liberia
Missão Kanimambo, Memórias & Gentes. Mozambique https://pt-pt.facebook.com/MKanimambo
National Association of Albino Centrafrique (ANACA) Central African Republic
National Disabled Albino Nepal Nepal
National Organisation of Albinism and Hypopigmentation (NOAH) United States www.albinism.org
NAVA Zambia http://www.navazambia.org
Nazigo Albino Persons Association (NAALPA) Uganda, Kayunga  District http://www.albinismaid.com
Nepal Albinism Organisation Nepal
NOAH Albinismus Selbsthilfegruppe e.V. Germany www.albinismus.de
NOAH Canada Canada http://noahcanada.ca/
Norwegian Association for Albinism (NFFA) Norway www.albinisme.no
OLA – Organizacio Latinoamericana de Albinismo International – South America albinismo@albinismo.org
Pacific Albinism Project (PAP) Pacific Islands (region) www.pacificalbinismproject.com
Positive Exposure International http://www.positiveexposure.org/
Promotion of Education Link Organization (PELO) Tanzania http://envaya.org/PELO/home
Salif Keita Global Foundation / SOS Albinos USA / Africa http://www.salifkeita.us/Home_Page.php
SINASRA – Support in Namibia of Albinism Sufferers Requiring Assistance Namibia http://www.sinasra.com/
SOS Enfants vulnérables sans frontières Congo, The Democratic Republic of
Soumaïla Bayni Traore, Bamako Mali
Suomen albinismiyhdistys ry (Finland) Finland
Swedish Albinism Network / Svenskar med albinism Sweden www.albinism.se. 
Taiwan Albino Caring Association Taiwan http://www.albinism.org.tw
Tanzania Albino Society (TAS) Tanzania www.tanzaniaalbinosociety.org https://www.facebook.com/TASTZ
Tanzanian YouthEnhancement and Poverty Eradication Organisation (TAYEPEO) Tanzania
The Albino Association of Malawi (TAAM), Federation of Disability Organisationsof Malawi (FEDOMA) Malawi http://www.fedomamw.net/
The Albino Foundation (TAF) Nigeria http://albinofoundation.org/aboutus.htm
The Albino Network Association of Nigeria (TANA) Nigeria / United Kingdom
Uganda Albinos Association Uganda www.ugandaalbinos.org
Under the Same Sun Canada / East Africa www.underthesamesun.com
United Albinos Association of Liberia Liberia http://www.dw.de/liberian-albinos-fight-for-rights/a-16971982
Zimbabwe Albino Association (ZIMAS) Zimbabwe
Российское Сообщество Альбиносов (Russian Community of People with Albinism) Russia www.albinizm.ru

Joining the World Albinism Alliance

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 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:

  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

Introduction to the World Albinism Alliance

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

Bringing together albinism associations from around the wordl