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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

AssociationCountry / Region in which it works? Website
 Afganistan 
Afrikaanse Albino FoundationAfrica http://www.afrikaansealbinos.nl/?page_id=98&lang=en
 Albania  
 Algeria  
 Andorra 
4As-Associação de Apoio de Albinos de AngolaAngola https://www.facebook.com/pages/4As-Associa%C3%A7%C3%A3o-de-Apoio-de-Albinos-de-Angola/513234915423327?sk=timeline&ref=page_internal
 Antiogua and Barbuda 
 Argen 
 Argentina 
 Armenia  
Albinism Fellowship of Australia (AFA)Australiahttp://www.albinismaustralia.org
 Austria 
 Azerbaijan 
 Bahrain 
 Bangladesh 
 Barbados 
 Belarus 
 Belgium 
 Belize 
Association des Hommes de bonnes Volontes Pour Le Development Benin  
Connexion Worldwide NGOBenin http://www.connexionworldwide.org/
 Bhutan 
 Bolivia 
 Bosnia and Herzegovina 
 Botswana 
Associacao das Pessoas com Albinismo na Bahia (APALBA – Albinos Da Bahia )Brazil http://www.apalba.org.br/
 Brunei 
 Bulgaria  
Burkinabe Association for the Integration of Persons with Albinism (ABIPABurkina Fasohttps://actiononalbinism.org/page/gs9xsz86k9m
Association nationale pour l’intégration des personnes albinos (ANIPA)Burkina Fasohttp://www.burkinafaso-cotedazur.org/albinisme
 Burma 
Albinos Sand frontiere (ASF) Burundi https://m.facebook.com/albinossf
Human Health Aid (HHA – ) Burundi http://humanhealthaid.jimdo.com/
 Cambodia 
ANIDACameroon http://www.anida.fr/l-association/
Association mondiale pour la défense des intérêts et la solidarité des albinos (ASMODISA)Cameroon  
Association of Handicapped Albino Youths of Cameroon and AfricaCameroon  
Ecran Total Cameroon http://www.ecran-total.org/english-page/
NOAH CanadaCanada  http://noahcanada.ca/
Under the Same SunCanada / East Africahttp://www.underthesamesun.com
 Cape Verde 
National Association of Albino Centrafrique (ANACA)Central African Republic  
 Chad 
 Chile 
China Albinism SocietyChinahttp://albinism.org.cn/
 Colombia  
 Comoros 
Action pour la protection et l’intégration des personnes albinos (APIDA)Congo, The Democratic Republic of  
Albinos sans Frontieres Congo, The Democratic Republic of  
Association pour la Protection et le Développement de la Personne Albinos (APRODEPA)Congo, The Democratic Republic of aprodepa.over-blog.com/
Foundation Mwinmba TexasCongo, The Democratic Republic of http://www.albinosfmt.com/
SOS Enfants vulnérables sans frontièresCongo, The Democratic Republic of  
TraubmanCongo, The Democratic Republic of http://traubman.igc.org/vidnigeriadrcongo.htm
 Cook Islands 
 Costa Rica 
 Croatia 
 Cuba 
 Cyprus 
Albinismus (Czeck)Czech Republic http://albinismus.cz/index.php
Danish Association for Albinism (DFFA)Denmarkhttp://www.albinisme.dk
 Djibouti 
 Dominica  
 Dominican Republic  
Albinism Foundation of East Africa (AFEA)East Africa / Kenya http://afea.or.ke/author/afea/
 East Timor  
 Ecuador 
 Egypt 
 El Salvador  
 Equatorial Guinea 
 Eritrea 
 Estonia  
 Ethiopia 
Fiji Albinism Project (Australia)Fiji  
Fiji Albinism GroupFiji  
Fiji Society for the Blind Fiji https://www.facebook.com/FijiSocietyForTheBlind
Healthy Skin FijiFiji http://www.healthyskinfiji.com.au/
Suomen albinismiyhdistys ry (Finland) Finland  
Finland Albinism AssociationFinland http://albinismiyhdistys.omasivu.fi/
Genespoir – Association Française des AlbinismesFrancehttp://www.genespoir.org/
 Gabon 
Association of Gambian Albinos Gambia http://albinismgambia.org/, https://www.facebook.com/pages/Association-of-Gambian-Albinos/224618174399800
Foundation for Sustainable Livelihood GambiaGambia  
 Georgia  
NOAH Albinismus Selbsthilfegruppe e.V.Germanyhttp://www.albinismus.de
African Calabash VolunteerGhanahttp://www.africancalabashvolunteer.org/
Ghana Association of Persons with Albinism (GAPA)Ghana http://www.gapagh.org/
 Greece 
 Grenada  
 Guatemala 
Confédération nationale des Albinos de GuinéeGuinea  
 Guinnea Bissau 
 Guyana  
 Haiti 
 Honduras 
 Hungary 
 Iceland 
Jeevan (life)  / Albinism India Group India http://www.jeevanonline.org
 Indonesia 
Albinismo EuInternational  
Positive ExposureInternational http://www.positiveexposure.org/
Witchcraft and Human Rights Information Network (WHRIN)International http://www.whrin.org/
OLA – Organizacio Latinoamericana de AlbinismoInternational – South America albinismo@albinismo.org
 Iran 
 Iraq 
 Ireland  
 Israel 
ALBINIT Italy http://www.albinit.org
Association nationale des Albinos de Côte d’Ivoire (ANASCI)Ivory Coast 
La Bien-être des Albinos de Côte d’Ivoire (BEDA-CI)Ivory Coasthttp://ongbedacotedivoire.org/
 Jamaica 
Japanese Albinism Network Japanhttp://www.albinism.jp/
 Jordan 
 Kazakhastan 
Albinism Society of Kenya (ASK) Kenyahttp://albinismsocietyofkenya.com/
kitui Kenya 
Albinism Empowerment Network (Kenya)Kenya  
Kenya Albino Child Support (KACSU)Kenya http://www.kacsu.org/
Kisii County People with albinism (KICOPWA)Kenya  
 Kiribati 
 Kuwait 
 Kyrgzystan 
 Laos 
 Latvia 
 Lebanon  
 Lesotho 
Liberia Albino Society Liberia  
United Albinos Association of LiberiaLiberia http://www.dw.de/liberian-albinos-fight-for-rights/a-16971982
 Libya 
 Liechtenstein 
 Lithuania 
 Luxembourg 
 Macedonia  
 Madagaskar 
Association of People with Albinism in Malawi (APAM)Malawihttps://www.facebook.com/AlbinismInMalawiApam
AROPAW (Association for the rights of orphans, people living with AIDS and Women Empowerment) Malawihttp://www.aropaw.org
The Albino Association of Malawi (TAAM), Federation of Disability Organisationsof Malawi (FEDOMA) Malawi http://www.fedomamw.net/
Kuala Lumpur and Selangor Albinism Association (KLSAA)Malaysia Kuala Lumpur and Selangor Albinism Association
 Maldives  
Soumaïla Bayni Traore, Bamako Mali 
 Malta 
 Marshall Islands 
 Mauritania 
 Mauritius 
 Mexico 
 Micronesia, Federated States of  
 Moldova 
 Monaco 
 Mongolia  
 Montenegro 
 Morocco 
Mozambican Albinos Support AssociationMozambiquehttps://pt-pt.facebook.com/MKanimambo
Associacao Defendo os Nossos Direitos – ADOD’Mozambiquehttps://m.facebook.com/ASSOCIACAO-DEFENDENDO-OS-NOSSOS-DIREITOS-144762072207094/about/
Missão Kanimambo, Memórias & Gentes.Mozambiquehttps://pt-pt.facebook.com/MKanimambo
SINASRA – Support in Namibia of Albinism Sufferers Requiring AssistanceNamibia http://www.sinasra.com/
 Nauru 
National Disabled Albino NepalNepalhttp://www.albinonepal.org
Nepal Albinism Organisation ? Details Nepal?
Contactgroep AlbinismeNetherlandshttp://www.angelfire.com/de/albinisme/
Albinism TrustNew Zealandhttp://www.albinism.org.nz
 Nicaragua 
 Niger http://albinofoundation.org/aboutus.htm
The Albino Foundation (TAF)Nigeria  http://albinofoundation.org/aboutus.htm
The Albino Network Association of Nigeria (TANA) Nigeria / United Kingdom 
 North Koreahttp://www.albinisme.no/
Norwegian Association for Albinism (NFFA)Norwayhttp://www.albinisme.no
 Omanhttp://www.pacificalbinismproject.com/
Pacific Albinism Project (PAP)Pacific Islands (region) http://www.pacificalbinismproject.com
PAS – Pakistan Albinism SocietyPakistanhttps://m.facebook.com/PakAlbinismSociety/
 Palau 
 Palestine 
 Panama  
 Papua New Guinea 
 Paraguay 
 Peru 
 Philippines http://www.albinosi.org.pl/
Albinosi (Poland) Polandalbinosi.org.pl
 Portugal 
 Qatar 
 Romania http://www.albinizm.ru/
Российское Сообщество Альбиносов (Russian Community of People with Albinism)Russiahttp://www.albinizm.ru
Amizero Association Rwanda 
 Sain Vincent and the Grenadines  
 Saint Kitts and Nevis 
 Saint Lucia 
Clarence Sebastian Foundation in SamoaSamoa http://clarencesebastianfoundation.yolasite.com/
 San Marino 
 Sao Tome and Principe 
 Saudi Arabia  
Alliance Nationaleour la Promotion a la reinsertion des Albinos au Senegal (ANPRAS)Senegal  
Association Nationale des Albinos du Sénégal (ANAS)Senegal albinossenegal.blogspot.com/
 Serbia  
 Seychelles 
Albino Savers Association, Sierra Leone (ASA-SL)Sierra Leonehttp://www.albinosaversl.com/375762985
 Singapore 
 Slovakia  
 Slovenia  
 Solomon Islands  
 Somaliahttp://www.albinism.org.za/
Albinism Society of South Africa (ASSA)South Africahttp://www.albinism.org.za/
Human Rights Media Centre, Albinism Anti-discrimination project  South Africahttp://www.ifpab.co.za/about_us.php
International Federation of People with Albinism and BlindnessSouth Africahttp://www.ifpab.co.za/about_us.php
UNITE FIGHT ILL TREATMENT FOR ALL THE PEOPLE WITH ALBINISM AND DISABILITYSouth Africa 
 South Korea 
 South Sudan http://www.albinismo.es/
Asociation de Ayuda a personas con albinismo (ALBA)Spainhttp://www.albinismo.es
 Sri Lanka 
 Sudan 
 Suriname 
Albinism Society of Swaziland Swazilandhttp://www.albinism.se/
Swedish Albinism Network / Svenskar med albinismSwedenhttp://www.albinism.se. 
 Switzerland 
 Syria  
Taiwan Albino Caring Association Taiwan http://www.albinism.org.tw 
 Tajikistanhttps://www.facebook.com/TASTZ+B30C31A30:C32A30:C32
Adventist Development & Relief Agency (ADRA) Tanzania Tanzania https://www.facebook.com/TASTZ+B30C31A30:C32A30:C32
Albino Peacemakers (Tanzania) Tanzania  
Good Hope Star FoundationTanzania  
Hemfa Tanzania Tanzania http://hemfatz.blogspot.com.au/2014_07_01_archive.html
KGRECOTanzania  
Promotion of Education Link Organization (PELO)Tanzania http://envaya.org/PELO/home
Tanzania Albino Society (TAS)Tanzania http://www.tanzaniaalbinosociety.org https://www.facebook.com/TASTZ
Tanzanian YouthEnhancement and Poverty Eradication Organisation (TAYEPEO)Tanzania http://www.asante-mariamu.org/
Standing VoiceTanzania / UKhttp://standingvoice.org/
Asante MariamuTanzania / UShttp://www.asante-mariamu.org
 Thailand 
 The Bahamas 
Association nationale des Albinos du TogoToga 
Cercle d’entraide aux albinos malvoyants (CEAM), Circle of assistance to visually impaired albino Togo 
 Tonga  
 Trinidad and Tobago 
 Tunisia 
Albinizm Dernegi, TurkiyeTurkeyhttp://albinizm.org.tr/
 Turkmenistan 
 Tuvaluhttp://www.gwefode.org/
Pellegrino Mpagi Foundation, Uganda Ugandahttp://pellegrinompagifoundation.org/
Gender Equality and Women Empowerment for DevelopmentUgandahttp://www.gwefode.org
he Source of the Nile Union of Persons with AlbinismUgandahttp://www.addinternational.org/
Action on Disability & Development (ADD) Uganda Country Programme.Ugandahttp://www.addinternational.org/
Africa Albino Foundation Uganda (AAFU)Uganda http://albinofoundationuganda.wordpress.com/about/
Uganda Albinos Association Uganda http://www.ugandaalbinos.org
Stichting The Umbrella of Hope Nederland / UgandaUganda / Netherlands http://www.umbrellaofhopeuganda.org
Nazigo Albino Persons Association (NAALPA)Uganda, Kayunga Districthttp://www.albinismaid.com
Standing Voice UK 
 Ukraine 
 United Arab Emirates  
International Foundation for DermatologyUnited Kingdom / Africa http://www.ifd.org
Albinism Fellowship UK and IrelandUnited Kingdom and Irelandhttp://www.albinism.org.uk
Hermansky-Pudlak Syndrome NetworkUnited Stateshttp://www.hpsnetwork.org/en/contact-us
National Organisation of Albinism and Hypopigmentation (NOAH)United Stateshttp://www.albinism.org
 Uruguayhttp://www.salifkeita.us/Home_Page.php
Salif Keita Global Foundation / SOS Albinos USA / Africahttp://www.salifkeita.us/Home_Page.php
 Uzbekistan 
 Vanuatu 
 Vatican City  
 Vatican City  
 Venezuela 
 Vietnam 
 Yemenhttp://www.navazambia.org/
NAVAZambiahttp://www.navazambia.org
Zimbabwe Albino Association (ZIMAS)Zimbabwehttp://www.africanadvice.com/1229633/Companies_And_Businesses/Zimbabwe/Zimbabwe_Albino_Association/
Signs of Hope Trust (Zimbabwe)Zimbabwe 
Alive Albinism InitiativeZimbabwealivealbinisminitiative.co.zw
Global Aid MissionsZimbabwehttps://globalaidmissions.org
Signs of Hope TrustZimbabwe 

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