Albinism Fellowship of Australia in Sydney, Australia | Non-profit organisation

Albinism Fellowship of Australia

Locality: Sydney, Australia

Phone: +61 1300 221 619

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25.01.2022 , . With participants located in 7 different time... zones, the meeting had to be held online at a time when some were just waking up and others were staying up late at night! The busy agenda included, among others, some discussions on the Pilot road map, on fundraising and on the upcoming global consultation on the future alliance. #GlobalAlbinism See more

24.01.2022 Wonderful interview shared by the lovely people at Albinos Chile. Further research is showing that albinism is likely very under-diagnosed and the throw-around figure of 1/17 000 affected may in fact be wrong, with the prevalence being higher. (Watch this space, I'm very excited about the work being done by Genespoir : Association Française des Albinismes in France, in particular) This follows from the information I recently shared about the now 19 types of albinism. Very positive, and also lovely to hear and see I.K. Ero, whose role is so pivotal to the albinism community worldwide.

22.01.2022 Thank you Mike for your leadership and advocacy for those affected by albinism. You firmly believe in PWA embracing their condition and excelling with it and despite it. 20 years has taken NOAH so far; the organisation is internationally recognised, which is in big part down to your guidance.

22.01.2022 Keep this in mind!

22.01.2022 Message to People With Albinism (PWA) of all ages to have your skin checked before the sun turns hot again! Photography and a dermatologist check valued at $300 is vailable FREE to all financial members who can get to Melbourne. A very big thanks to Sinclair Dermatology for this fantastic offer!!!

19.01.2022 A fantastic turn out at the 2019 Adelaide Conference and a jam packed program catering to adults and kids #leadingtheway

19.01.2022 Not one but TWO new genes identified in the albinism world in the past week! HPS11 (BLOC1S5) and the 21st identifier, OCA8. Wonderful work in research partnership by our friends at Genespoir : Association Française des Albinismes Brand new information which opens up to so much more future research. (EB)

18.01.2022 This is a fantastic event for scientists and medicos to learn more from researchers and leaders in the albinism field. There is also a non scientist section - follow the link for details

16.01.2022 26 January 2020, Paris, France Persons with albinism from 6 regions of the world just voted unanimously to form an official alliance on albinism! The vote is a first step to promote solidarity among albinism groups around the world. It is also a big NO to attacks, discrimination and ignorance and a big YES to a better quality of life for all people with albinism and their families around the world. ... There is a lot of work to do but hope abounds. More to come! To find out more about albinism around the world, read https://undocs.org/A/74/190 See more

16.01.2022 On this International Albinism Awareness Day - we are #MadeToShine ...

15.01.2022 Tomorrow is International Albinism Awareness Day. Events start tonight via Zoom in conversation with international model Tasmin Luciana. (Huge thanks to VisAbility WA for making this happen). I would encourage any adults or parents of tweens and teens to have them listen in, ask questions, and discover how to embrace their albinism and use it for advocacy and acceptance.. Date: Friday 12th June 2020... TIME: 7PM WEST TIME (AUSTRALIA), 9PM EAST TIME (AUSTRALIA) GUESTS: CONTACT US TO RESERVE YOUR SPACE [email protected] COST: FREE. See more

15.01.2022 WHY SHOULD YOU JOIN THE AFA? To support the organisation behind this page, we invite those with a connection to albinism to join as a financial member. This will give you access to the members' only area of our recently updated website. You can go to the public area of the website and scroll down to the bottom of each page to see headings of the information available to members - everything you want to know about albinism, education support, health and lifestyle, careers and personal stories of those with albinism (great role models) and when Covid restrictions lift - events in each state and the AFA national conference. albinismaustralia.org

13.01.2022 WHY SHOULD YOU JOIN THE AFA? To support the organisation behind this page, we invite you to join as a financial member. You have access to members only content available on our 'being overhauled' website. The site is in its final stages of development.... You will receive member newsletters with offers and information. Discounted rates for our conferences, discounted attendance at any fee incurring local (state or regional) events. . ALL the people behind the scenes - committee, admin, social media etc are volunteers. Even so, it costs money to have an association: insurance, fees to continue with our name, postage, our information phone line, etc. Prices vary, $50 per year for a family registration. Register here! [https://www.trybooking.com/book/event?eid=629321&](https://www.trybooking.com/book/event?eid=629321&)

12.01.2022 ! Paris, January 28, 2020 27 delegates coming from 7 different continents elected a Tech...nical Team and a Secretariat to serve the Alliance during its - . The Technical Team, working as the board, will give oversight to the work of the Secretariat. The Secretariat will be in charge of executing the objectives of the Pilot while the UN Independent Expert on Albinism, UN Albinism - Ikponwosa Ero, Personal Page will serve as a Technical Adviser providing overall support to the Pilot. - Carolin Schroeder (Germany) - Isaac Mwaura (Kenya) - Michael McGowan (USA) - Shari Parker (Australia) - Antoine Gliksohn (France) - Elizabeth Beales (Australia) - Julio Garcia (Argentina) This election result represents a cross section of continents, nationalities and genders. This truly global team looks forward to serving in this initial 12 month pilot stage, to ensure the strength, effectiveness, and future of the Global Albinism Alliance. Many thanks to Open Society Foundations and Under The Same Sun for making this happen. Photo by Antoine Bonfils and Claire Nicol #GlobalAlbinism

10.01.2022 A wonderful recognition of the hard work, dedication, and advocacy IK has pursued in her role as UN independent expert on the enjoyment of human rights by persons with albinism. IK is a true example of grace under pressure, and we offer her our congratulations on receiving this award.

10.01.2022 We are pleased to have added our data to the list!

08.01.2022 The atrocities continue. While much is being done, much is still to be done.

06.01.2022 A truly inspiring moment.

06.01.2022 , , : ! Group photo from the Exploratory Meeting on the creation of... a Global Albinism Alliance. Paris, January 27, 2020 #GlobalAlbinism with Albinism Fellowship of Australia, Fiji Albinism Project, , , Jeevan Trust, National Disabled Albino NEPAL, Albinizm Dernei, Türkiye, Albinism Society of KENYA, Albinism Society of South Africa, Association of Persons With Albinism in Malawi, Thando Hopa, Association Nationale de l'Albinisme au Sénégal - ANAS, Genespoir : Association Française des Albinismes, Noah Albinismus, Albinit, ALBA, Asociación para la ayuda a personas con albinismo, Albinism Europe, National Organization for Albinism and Hypopigmentation - NOAH, HPS Network, Corporación Albinos Chile, Simplemente Amigos - Fundación Nacional de Albinismo, Albinos do meu Brasil e do mundo, Albinismo em foco, Fundación Albinos por Colombia, Under The Same Sun, Standing Voice, Open Society Foundations, Hon. Isaac Mwaura - Senator for Persons With Disabilities. UN Albinism - Ikponwosa Ero, Personal Page Photo: Antoine Bonfils

06.01.2022 Could you please do me a favour? I am lobbying for Sydney train stations Central, Town Hall, Wynyard and Circular Quay to be made AIRA access sites as part of t...he Celebrating Access 2020 campaign. To help all you need to do is: - Log on to the site: https://docs.google.com//1FAIpQLSctI5nf4P1sz8inLI/viewform - Mention Sydney Trains and the four stations (above) - And say that it will benefit people who are blind or have low vision. For two minutes of your online time you can benefit many residents and visitors to Sydney who are blind or have low vision. (photo of myself boarding a Sydney train with my former guide dog. Pic credit Sydney Morning Herald)

05.01.2022 #MadeToShine #WatchUsGo #Albinism

04.01.2022 Supporting International Albinism Awareness Day, June 13th

04.01.2022 Supporting people with albinism in some of the hardest places to be a person with albinism.

01.01.2022 More genetic news from research supported by Genespoir : Association Française des Albinismes. An unusual connection discovered to HPS! Hermansky-Pudlak Syndrome is a condition in which albinism is a symptom.