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Standing Voice

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Standing Voice

We promote the rights and well-being of people with albinism in Africa through health, education, economic empowerment, and capacity development.

25/03/2026

✨ Breaking Barriers, Advancing Rights ✨

This week in Malawi, under the EU-funded Titukulane Project, we validated findings from a Barrier Analysis on Economic, Social, and Cultural Rights for persons with albinism—an important step toward strengthening economic security.

The study, led by the Malawi Human Rights Commission, as part of a Standing Voice initiative, in partnership with MACODA and APAM, reveals the complex barriers people face in accessing healthcare, education, livelihoods, justice, and social protection.

💬 One key message stood out: Strong legal frameworks exist, but gaps in implementation continue to limit inclusion, protection, and opportunity.

Through the Titukulane Project, we are taking action: breaking barriers and advancing dignity, equality, and economic empowerment. Implemented by , , , and , and co-funded by and , the project is driving multi-sector collaboration and inclusion across Malawi.

💙 Creating a future where persons with albinism can thrive—without limits.

📸 Owen Mchekeni

08/12/2025

⏰ 24 HOURS TO GO!

This is it, the last chance to double your impact for people with albinism in Tanzania and Malawi during this years campaign.

Thank you to everyone who has donated so far.

Your support provides:
💙 Life-saving access to skin cancer services
💙 Vision care that helps students excel in school
💙 Safe homes, counselling, and community protection for families

For the next 24 hours only, every donation is MATCHED pound for pound, so your gift goes twice as far.

Don’t wait, please help us reach our target and change more lives before the campaign closes at midday tomorrow, Tuesday 9th December.

👉 Donate now via the link in our bio.

02/12/2025

🚨 It’s Giving Tuesday — and our Christmas Challenge is LIVE! 🚨

For the next seven days, every donation to Standing Voice will be MATCHED by a generous donor — at no extra cost to you.

That means your gift will be DOUBLED, creating twice the impact for the people we work to empower in Tanzania and Malawi.

👉 If you’re able, please support our campaign via this link in our bio.

Across Africa, people with albinism continue to face significant challenges — including preventable skin cancer, barriers to education and employment, and harmful misconceptions. But together, we are changing this story.

With your support, people with albinism can access life-saving healthcare, build confidence, strengthen their communities, and create brighter futures.

Donations must be made to Standing Voice through the Big Give Christmas Challenge platform and received between 2–9 December to be eligible.

Help us reach our target—every gift counts! Thank you for your support.

📸 Claudia Fialho / Beyond Suncare

16/10/2025

🌟 The Titukulane Project Launches! 🌟

Today, we’re proud to announce the launch of the Titukulane Project (2025–2028), a transformative initiative strengthening the socio-economic resilience of persons with albinism (PWA) in Malawi through access to education, healthcare, and livelihoods.

“Titukulane,” meaning Empowerment in Chichewa, reflects our goal: creating opportunities for persons with albinism to thrive and contribute meaningfully to society as agents of change. 🌍✨

Implemented by Standing Voice Malawi, Girls Empowerment Network, and Beyond Suncare, and co-funded by the European Union in Malawi and the Fondation Pierre FabrenPierreFabre, the project promotes inclusive development and multi-sector collaboration.

05/09/2025

🚨 Breaking news! 🚨 Our application for SPF50+ sunscreen to be added to the WHO’s Essential Medicines List has been approved!

This is a historic victory for people with albinism worldwide, especially in Africa and across the tropics, where preventable skin cancer claims so many lives, far too young. Sunscreen is now recognised as a life-saving necessity.

This success was made possible through tireless collective advocacy, co-led by UN Albinism: Muluka-Anne Miti-Drummond, and the Global Albinism Alliance. Standing Voice is proud to have contributed to this global effort as a co-applicant, alongside Beyond Suncare, Fondation Pierre Fabre, International League of Dermatological Societies, International Alliance of Dermatology Patient Organizations - GlobalSkin and the efforts of many others in our community.

13/06/2025

🌍✨ International Albinism Awareness Day 2025 ✨🌍

Theme: “Demanding Our Rights: Protecting Our Skin, Preserving Our Lives”

Today, we join the global community in marking International Albinism Awareness Day (IAAD)—a day to amplify the voices of people with albinism, celebrate diversity, challenge harmful myths, and demand the respect, protection, and dignity every person deserves.

This year’s theme, “Demanding Our Rights: Protecting Our Skin, Preserving Our Lives,” is a powerful call to action:

🧴 Access to sun protection is not a luxury—it’s a right.
🏥 Quality healthcare and early cancer treatment are not optional—they are essential.
📣 Our voices must be heard, our lives valued, and our rights fully protected.

At Standing Voice, we are calling for urgent action from governments, healthcare systems, and communities. Together, we can end discrimination and build a world where every person with albinism can live safely, confidently, and free from fear.

📸 Chihiro Tagata Fujii (1) / Ramadhan Mfinanga (2 & 3) / Mite (4)

15/05/2025

🌍 Regional Workshop on Albinism & Mental Health
📍 Abidjan, Côte d’Ivoire

This week, Standing Voice’s Welfare Manager Chrispine Mabwenga (Tanzania) and Community Support & Counselling Officer Daisy Chikowi (Malawi) joined partners at a landmark regional workshop on albinism and mental health.

Hosted by the Fondation Pierre Fabre under the APPASAAS project, the workshop convened partners from across Africa to enhance mental health support systems for people with albinism.

Chrispine and Daisy shared insights from SV’s trauma-informed, community-driven initiatives in Malawi and Tanzania. Their presentations highlighted how mental health care, economic empowerment, and social inclusion are interconnected in addressing the challenges faced by people with albinism.

It was energising to connect with dedicated colleagues from across the continent, all working to uphold the rights, dignity and well-being of people with albinism - Source of the Nile Union of Persons with Albinism - SNUPA Albinism Umbrella Africa Albinism Network Standing Voice Malawi Standing Voice Tanzania

Mental health is a fundamental human right, yet it remains one of the most overlooked needs. This workshop marked a pivotal step toward more inclusive and holistic care.

We extend our gratitude to the Pierre Fabre Foundation for their leadership in helping drive this vital work forward.

02/05/2025

🌍✨ Last week in Prague, the Global Albinism Alliance brought together leaders from albinism organisations across the world for a powerful side meeting during the 2025 GlobalSkin Conference 🇨🇿.

With participants from 20 countries representing every region of the globe, it was a heartwarming and energising gathering, strengthening global solidarity and sharing experiences that unite our movement. 💛

Standing Voice was honoured to share the space with such incredible peers and partners from across the movement, including Anne-Britt Brandshaug from Norsk Forening for Albinisme (Norway 🇳🇴), Camille Ejzenberg from Genespoir : Association Française des Albinismes (France 🇫🇷), Claudia Núñez from Corporación Albinos Chile (Chile 🇨🇱), Constance Katihabwa from L-TOFA (Burundi 🇧🇮), Elif Nur Kayalar from Albinizm Derneği (Turkey 🇹🇷), Elizabeth Beales from the Albinism Fellowship of Australia (Australia 🇦🇺), Hugo Vlielander from Oogvereniging Albinisme (Netherlands 🇳🇱), Kristina Venning and Jo Bennett from the Albinism Fellowship UK & Ireland (🇬🇧🇮🇪), Jorge Rodriguez Bizarro and Teresa Aguilera from Fundación Piel de Luna Albinos de México A.C. (Mexico 🇲🇽), Julio Garcia from Fundación Nacional de Albinismo Simplemente Amigos (Argentina 🇦🇷), Karen Bly from National Organization for Albinism and Hypopigmentation - NOAH (USA 🇺🇸), Kenneth Skovly Larsen from Dansk Forening For Albinisme (Denmark 🇩🇰), Kouamé Victor Kouamé from ONG BEDACI (Côte d’Ivoire 🇨🇮), 肖磊 from the Chinese Organization for Albinism (China 🇨🇳), Katseku Newton Kwamla from the Ghana Association of Persons with Albinism (Ghana 🇬🇭), Peter Ogik from Source of the Nile Union of Persons with Albinism - SNUPA (Uganda ), Rosiane Esteves dos Santos from Coletivo Nacional das Pessoas com Albinismo (Brazil 🇧🇷), Soňa Daňková Valentová from Albína z.s. (Czech Republic 🇨🇿), Harry Freeland and Robi Mataiga from Standing Voice (UK & Tanzania 🇬🇧🇹🇿), and Antoine Gliksohn and Carol Prendergast from the Global Albinism Alliance 🌐.

🙏 Special thanks to Global Albinism Alliance and International Alliance of Dermatology Patient Organizations - GlobalSkin for making this gathering possible!

📸 Global Albinism Alliance

07/04/2025

🌍 World Health Day 2025 🌿
Theme: Healthy beginnings, hopeful futures

At Standing Voice, we believe that every child deserves a healthy start — and every person the chance to thrive. But across Africa, people with albinism face life-threatening health risks from the very beginning, simply due to a lack of access to basic healthcare, information, and protection.

We’re working to change that — because health is a human right, and it starts at birth.
💛 Each year, we support thousands of individuals and families through:
👩🏽‍⚕️ Training health workers to deliver inclusive care
🏥 Expanding access to dermatology services across Tanzania, Malawi & beyond
📚 Providing health education and awareness
🧴 Distributing free sunscreen and sun hats
🕶️ Offering vision care and assistive devices
🧠 Supporting trauma recovery and inclusive education

☀️ Every hour in the sun is a risk — but it doesn’t have to be.
With the right support, healthy beginnings can lead to hopeful, empowered futures.

✊🏽 Take action today:
Sign the petition urging the WHO to recognise sunscreen as essential medicine:
👉 actionnetwork.org/petitions/who_petition_sunscreen

📸 Elizabeth Wayne, Harry Freeland, Chihiro Tagata, Ramadhan Mfinanga, Ebrahim Mirmalek

04/04/2025

🌟A Major Step Forward for the Health of People with Albinism🌟

Sunscreen is a life-saving resource for people with albinism—offering critical protection against sun damage and skin cancer ☀️Yet across Africa, it remains inaccessible to many and is largely absent from public health systems.

📢 Exciting news: The World Health Organisation (WHO) is reviewing a joint application to include sunscreen on the Essential Medicines List (EML) 🧴🌍 — If successful it will be a crucial step toward making it available to all who need it.

Leading the charge:
🔹 Global Albinism Alliance – a global voice advocating for the rights and well-being of people with albinism.
🔹 Muluka-Anne Miti-Drummond – UN Independent Expert on the enjoyment of human rights by persons with albinism.
🔹 Elisa Morgera – UN Special Rapporteur on human rights and climate change.

With the support of:
🤝 Africa Albinism Network , Fondation Pierre Fabre , Beyond Suncare , International League of Dermatological Societies and Standing Voice

🗓️ Next milestone: WHO’s 25th Expert Committee meets May 5–9 in Geneva.

Let’s ensure sunscreen becomes accessible to those who need it most. This is more than a health policy decision — it’s a step toward equity, dignity, and justice for people with albinism 💛 ✊🏾

26/03/2025

🌟 Celebrating the Impact of the Ufulu Wanga Project 🌟

Today, we were honoured to host the 🎉 closing event for the 🇪🇺 European Union in Malawi and the Fondation Pierre Fabre funded Ufulu Wanga Project—a two-year initiative dedicated to defending and promoting the right to life, health, and security for persons with albinism in Malawi ✊🏽✨.

We were privileged to hear 🎤 keynote speeches from Secretary of Health Dr. Samson Mndolo and Team Leader for Social Sectors at the EU Michele Crimella. We deeply appreciate the presence and support of government representatives 🏛️, development agencies 🌍, NGOs 🤝 and civil society leaders 🗣️, including those advocating for the rights of persons with albinism who joined us for this special occasion.

A special thank you to Bonface Massah and Project Evaluation Consultant Wingston Ng’ambi for their insightful 📊presentations, and to our Ufulu Wanga project partners: the Association of Persons with Albinism in Malawi, Beyond Suncare, and Youth Net and Counselling (YONECO) 🤍

Together, we are building a future where the rights, well-being, and inclusion of persons with albinism are fully recognised and protected 💪🏾

📷 by Owen Mchekeni

🌍✨

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Unit 34B, Regent Studios, 8 Andrews Road
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Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Website

http://www.standingvoice.org/ https://donate.biggive.org/campaign/a05WS000007b5smYAA

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