International Albinism Awareness Day

#TeamJAK @ 1911 Initiative 25 Scholarship Run/Walk  on Saturday, June 21st starting at 8:00 AM at the Village of Matteson Community Center; 20642 Matteson Ave; Matteson, IL US 60443. Please join us in raising Albinism Awareness and Funds for NOAH by participating in the 1911 Initiative 5K Scholarship Fund Run/Walk as part of Team JAK. Register & join Team JAK in Step 2 of registration and $5 of your registration fee will be donated to NOAH. Please share with your network to help us spread the word. Join “Team JAK” in Step 2 of the registration process to benefit NOAH! Register to participate!

Come to  Celebrate IAAD with NI NOAH  on Saturday, June 14th, from 10am – 12pm at the Butterfield Park, 385 E VanBuren St. Elmhurst, IL. Family Gathering in the Park ~ Face Painting ~ Bubbles ~ Donuts and Coffee ~ Fun at the Playground (great for all age groups!) RSVP by June 11th to acontant@albinism.org

Portland, OR Meet-up!  on Friday, June 13th from 3:30 to 6:30pm at the location 8524 SE 17th Ave Portland OR 97202. Slow Pour Coffee + Bar; We’ll discuss forming an albinism group in the Portland area & tune in to NOAH Night on Gatherly. Fun, fellowship, and food available for purchase! Donations appreciated to support NOAH :  Contact: longs-barons.0q@icloud.com

The theme calls on authorities to: Recognize that the failure to prevent skin cancer related deaths – which are foreseeable, yet preventable – in persons with albinism constitutes not only a violation of the right to health, but also the right to life Take steps to prevent skin cancer related deaths in persons with albinism, including through skin cancer screening and provision of sunscreen Add sunscreen to the WHO Essential Medicines List and national essential drug list Ensure data on skin cancer prevalence is disaggregated to reflect the number of persons with albinism affected by skin cancer

Albinism groups are invited to: Reflect and share information on cases of skin cancer in their country Celebrate and share advances in skin cancer prevention and treatment Highlight further action required

The theme for IAAD 2025 is: “Demanding our rights: Protect our skin, Preserve our lives”. This theme highlights the urgent need for awareness, prevention, and access to essential healthcare for persons with albinism , emphasizing the life-threatening impact of skin cancer and the importance of protection, early detection, and treatment. It also ties well with ongoing advocacy around the addition of sunscreen to the WHO EML. The theme calls on authorities to: Recognize that the failure to prevent skin cancer related deaths – which are foreseeable, yet preventable – in persons with albinism constitutes not only a violation of the right to health, but also the right to life Take steps to prevent skin cancer related deaths in persons with albinism , including through skin cancer screening and provision of sunscreen Add sunscreen to the WHO Essential Medicines List and national essential drug list Ensure data on skin cancer prevalence is disaggregated to reflect the number of persons with...

The 2025 theme " Demanding our rights:Protect our skin, Preserve our lives. '' highlights  the urgent need to prevent skin cancer in persons with albinism  through awareness, screenings, and sunscreen access. The risk of skin cancer  is extremely high for persons with albinism, and the lack of access to sunscreen, protective gear, as well as skin cancer screening and treatment can lead to foreseeable, yet preventable deaths. Skin cancer is the primary cause of death for persons with albinism in the Southern African region, rendering sunscreen an essential medicine, not a cosmetic product.  The majority of national action plans on albinism  adopted by governments include measures to ensure access to sunscreen, protective clothing and regular dermatological check-ups and skin cancer treatments. Several countries have initiatives providing free or subsidized sunscreen and sun protective clothing,  access to dermatological services and skin cancer screening, de...

The year 2025 marks the tenth anniversary of the establishment of the mandate on the enjoyment of human rights by persons with albinism . In commemoration of this milestone, in her report the current mandate holder, Muluka-Anne Miti-Drummond , provides an overview of progress made in the implementation of rights of persons with albinism worldwide over the last decade. The Independent Expert also outlines persisting challenges and makes recommendations for the continued advancement of the rights of persons with albinism. 10th anniversary of the mandate  REPORT .

Join the  Ohio IAAD Celebration  on Saturday, June 7th, starting at 1:00 PM; location: Rule 3, 650 Windmiller Dr, Pickerington, OH 43147. You’re invited to join fellow NOAH community members for a social gathering in celebration of International Albinism Awareness Day! $25 per person – includes bowling lane & shoe rental attendees who are not bowling can attend free of charge RSVP by May 23rd!