Global Albinism Alliance

This week, the GAA is at the World Health Organization Headquarters??in Geneva ???? for the Second World Meeting on skin-related Neglected Tropical Diseases (NTDs). ??The WHO list of NTDs is a diverse group of 21 conditions that are mainly prevalent in tropical areas, where they affect more than 1 billion people who live in impoverished communities in tropical areas. They are caused by a variety of pathogens, and cause devastating health, social and economic consequences. ??While Skin Cancer in Persons with #Albinism isn’t officially listed as an NTD by the #WHO, it does meet all the criteria. By representing the albinism community at this WHO meeting, the GAA continues its global efforts to mobilize stakeholders and resources to combat skin cancer in people with albinism.?? It was great to connect and reconnect with both new and familiar faces, as well as valued partners of the GAA, during this meeting—including representatives from GlobalSkin - International Alliance of Dermatology Patient Organizations, The International League of Dermatological Societies, the WHO Control of NTD Department and the UN Special Rapporteur on Leprosy. #SkinNTDs #SkinCancerAwareness #skinNTDs2025 #ActionOnSkinCancerAndAlbinism

The theme for International Albinism Awareness Day 2025 has been announced ?? ?? “Demanding our rights:? Protect our skin, Preserve our lives".?? Announced by the United Nations Independent Expert on Albinism, Muluka-Anne Miti-Drummond, this theme highlights the urgent need for awareness, prevention, and access to essential healthcare for persons with albinism, emphasising 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 World Health Organization List of Essential Medicines (WHO EML). As explained by the UN Expert, 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 #IAAD #IAAD2025 #SkinHealth4Life #SunscreenIsAdrug, #Albinism #ActionOnSkinCanerAndAlbinism

Celebration of the 10th Anniversary of the UN Mandate on Albinism ?? 10 years ago, on April 15, 2015, the Human Rights Council of the United Nations adopted resolution A/HRC/RES/28/6 establishing a mandate and appointing an independent expert to address the enjoyment of human rights by persons with albinism worldwide. Last Wednesday, to mark this important milestone, a side-event organized by the UN Mandate on Albinism was held at the United Nations in Geneva during the 58th Session of the Human Rights Council. Alongside the other invited speakers, our Executive Director, Antoine Gliksohn, reflected on the progress made over the past decade.He highlighted the key role played by the UN Mandate in uniting the global albinism community, but also pointed out ongoing challenges faced around the world. Featured speakers: ??UN Independent Expert Muluka-Anne Miti-Drummond ??Bonface Massah MPhil Human Rights, MPhil Disability studies Massah - Africa Albinism Network Executive Director ??Dr. Enid Rivera-Jimenez - Pediatric Hematologist-Oncologist, Puerto Rico ??Antoine Gliksohn - Global Albinism Alliance Executive Director ??H.E. Isaac Mwaura, - Government Spokesman, Kenya Moderator: ??H.E Ambassador Khadra Ahmed Dualeh - Somalia An event sponsored by Tanzania ????, Lesotho ???? and Somalia ???? with the support of the Global Albinism Alliance, the Africa Albinism Network, National Organization for Albinism and Hypopigmentation - NOAH and the HPS Network Albinism associations and NGOs representatives in attendance, included: ??GENESPOIR, France ???? (ELISABETH RIVAUX) ??Dansk Forening For Albinisme, Denmark ???? (Kenneth Skovly Larsen) ??National Organization for Albinism and Hypopigmentation - NOAH, USA ???? & Canada ???? (Sarah Kane) ??Albinism Multipurpose Association, Lesotho ???? (Motlatsi Mossasse) ??African Albinism Foundation / Stichting Afrikaans Albinisme, Netherlands ???? (Annemarie Van Beek) #Albinism #HumanRights #AlbinismAdvocacy #AlbinismAwareness #HumanRightsAdvocacy #HRC58

Last Friday, the Global Albinism Alliance, together with International Service for Human Rights, made an oral statement in response to the presentation of the latest reports of the ???? United Nations Independent Expert on Albinism, Muluka-Anne Miti-Drummond, presented at the 58th Regular Session of the Human Rights Council in Geneva. In this statement, Antoine Gliksohn, GAA Executive Director, pointed out, among other things, that “While significant progress has been made over the past decade, the rights of persons with albinism remain today a serious concern throughout the world.” ?? Watch the statement:?https://lnkd.in/eAbwjZzb ?? Read the full statement: https://lnkd.in/e6Cr7NXp In this session, the UN Expert presented three reports: ??A/HRC/58/57 - Tenth anniversary report of the mandate of the Independent Expert on the enjoyment of human rights by persons with albinism: https://lnkd.in/eRsjU3t2 ??A/HRC/58/57/Add.1 - Visit to the United States of America (and Puerto Rico) ???? ????: https://lnkd.in/eebeTqwb ??A/HRC/58/57/Add.2 - Visit to Lesotho ????: https://lnkd.in/e3kevNfy ?? Watch the full session here (choose your language among EN, FR, SP, AR, CH, RU) : https://lnkd.in/e3R5a79u ??UN Expert presentation starts at 1hr19’53” ??GAA statement starts at 2hr29’30” ??National Organization for Albinism and Hypopigmentation - NOAH & HPS Network joint statement (by Sarah Kane) starts at 2hr33’05” ??Africa Albinism Network statement (by Bonface Massah MPhil Human Rights, MPhil Disability studies) starts at 2hr34’49” #HumanRightsCouncil #HRC58 #HumanRightsAdvocacy #AlbinismAwareness #GlobalAlbinism #Albinism #HumanRights

February 28 - ???? Today is Rare Condition / Disease Day ???? Today, we recognize and celebrate individuals and families with rare health conditions, including people with albinism. ??#Albinism is rare! While its prevalence varies by region and population, in most countries, fewer than 1 in 5,000 people have albinism. People with albinism (whether syndromic or non-syndromic) share a lot of commonalities with people affected by other rare health conditions. They face a multitude of challenges that extend beyond their health conditions. These challenges encompass: ??Delayed Diagnosis: Many PWA experience prolonged periods before receiving an accurate diagnosis, leading to uncertainty and delays in appropriate care. This is particularly true in the light-skinned populations, as well as with Hermansky-Pudlak Syndrome. ??Limited Information and Expertise: There is a scarcity of information and specialized knowledge about albinism among healthcare providers, resulting in uninformed or inadequate care. ??Social Isolation and Stigma: The rarity of albinism often leads to social exclusion, discrimination, and a sense of isolation for PWA and their families. ??Financial Burden: The high costs associated with the health aspects of albinism can lead to significant financial strain, with many families facing increased risk of impoverishment (when they can only afford any health management). ??Educational and Employment Challenges: Individuals with albinism may encounter difficulties in accessing education and maintaining employment due to their albinism, leading to reduced opportunities and financial instability. ??Psychosocial Impact: The emotional and psychological toll on PWAs and their families is profound, often leading to mental health struggles such as depression and anxiety. ?? For an updated overview of the prevalence of albinism worldwide: https://lnkd.in/eDmQRZny The Global Albinism Alliance is a proud member of RARE DISEASES INTERNATIONAL and a proud supporter of #Resolution4Rare. People and families affected by rare health conditions deserve greater attention and support to live fulfilling lives and fully participate in society! ?? More info: ??Rare Diseases International: https://lnkd.in/dGC9uhAN ??WHA Resolution on Rare Diseases: https://lnkd.in/dPkjSDJk ??Hermansky-Pudlak Syndrome Network: https://lnkd.in/eq_RDuHb #AlbinismAwareness #RareDiseaseDay #RDD2025 #RareDiseases?

?2015-2025 - 10th Anniversary of the UN Mandate on the Rights of Persons with albinism ? Join us next week in Geneva for a Human Rights Council side event to mark this important milestone. ?? Wednesday, March 5th, 2025 ?? 13:00-14:00 CET ??Geneva, Palais des Nations, Room XXII The discussion will reflect on progress, challenges, and the way forward, ahead of the Independent Expert’s 2025 report to the ???? United Nations Human Rights Council session on March 7th 2025. Featured speakers: ??UN Independent Expert Muluka-Anne Miti-Drummond ??H.E Ambassador Dr. Abdallah Saleh Possi - Tanzania ??Antoine Gliksohn - Global Albinism Alliance Executive Director ??Bonface Massah MPhil Human Rights, MPhil Disability studies - Africa Albinism Network Executive Director ??Dr. Enid Rivera-Jimenez - Pediatric Hematologist-Oncologist, Puerto Rico Moderator: ??H.E Ambassador Khadra Dualeh - Somalia An event sponsored by Tanzania ????, Lesotho ???? and Somalia ???? With the support of the Global Albinism Alliance, the Africa Albinism Network, the National Organization for Albinism and Hypopigmentation - NOAH and the HPS Network #Albinism #HumanRights #AlbinismAdvocacy #AlbinismAwareness #HumanRightsAdvocacy #HRC58

?? New breakthroughs in Global Advocacy at the #WHO! ?? Earlier this week, the Executive Board of the World Health Organization adopted decisions on two key WHA Resolutions and recommended their advancement to the 78th World Health Assembly in May 2025. These resolutions, which adoption would significantly benefit the global #albinism community, address two different aspects of our condition: ??“Skin diseases as a global public health priority” Read the full draft resolution ?? https://lnkd.in/e5tAvVgK ??“Rare diseases: a global health priority for equity and inclusion” Read the full draft resolution ?? https://lnkd.in/dPWcgRZd The Global Albinism Alliance is very proud ?? to be a member of the two Multi-stakeholder Coalitions behind those two advocacy initiatives: ? The World Skin Health coalition, coordinated by GlobalSkin - International Alliance of Dermatology Patient Organizations ? The Coalition in support of the WHA #Resolution4Rare coordinated by RARE DISEASES INTERNATIONAL. ?? Next step: the 78th World Health Assembly in May 2025! Let's keep pushing for our #health! ?? #SkinDiseasesResolution, #Dermatology, #SkinHealthforAll, #WHA78, #EB156, #GlobalAdvocacy, #Albinism, #AlbinismAwareness

??Landmark Ruling: African Court holds Tanzania ???? Accountable for Failing to Protect Persons with Albinism ?? On February 5, 2025, the African Court on Human and Peoples' Rights ruled in “Centre for Human Rights & Others v. Tanzania” that Tanzania has failed to protect persons with albinism and failed to ensure key human rights. This includes, violation of : ?? Right to life ?? Prohibition against torture and cruel, degrading and inhumane treatment ?? Right of children with albinism not to be subjected to abduction, sale and trafficking ?? Right to equality and non-discrimination As well as failure to ensure: ?? Right to education ?? Right to health What’s next? The Court has ordered legal reforms, including amending the Witchcraft Act to criminalize attacks on persons with albinism. Read the full judgment ?? https://shorturl.at/Sr4aH As mentioned by Muluka-Anne Miti-Drummond, the ???? United Nations Independent Expert on the Rights of Persons with Albinism, “[this] is an important milestone in the ongoing efforts to enforce the human rights of persons with albinism and the case presented the African Court with a unique opportunity to generate an important precedent in relation to State obligations regarding the human rights of persons with albinism in Africa,” Read the full statement ?? https://lnkd.in/etmrNTRH News release by the Centre for Human Rights, University of Pretoria ?? https://lnkd.in/dQPnHd2y ?? Our congratulations to the applicants and to all advocates involved in this case. This is a major step towards justice for persons with albinism in Tanzania, Africa and beyond. #HumanRights #AlbinismRights #Justice #Albinism

Did you attend the 2025 International Scientific Conference on #Albinism? If not, ?? here is what you’ve missed on Wednesday January 22nd ISCA 2025 Day 2?? - Genotype-Phenotype Correlations & Cell Biology ??New experimental approaches to better understand and diagnose oculocutaneous albinism Vincent MICHAUD (Bordeaux, France ????) ??Hermansky-Pudlak syndrome in Greece and Cyprus: The “Goldberg(s)” Rodopi and Troodos variations Effrosyni MANALI (Athens, Greece ????) ??Non-coding variants involved in the diagnosis of albinism Modibo DIALLO (Bordeaux, France ????) ??OCA7 or OA2? Charlotte Kruijt (Zeist, The Netherlands ????) ??Control of skin pigmentation by TMEM138 and the primary cilium Brice Magne (Philadelphia, PA, USA ????) ??Phenotype-genotype correlation in a cohort of Israeli patients with OCA1 albinism Or SHMUELI (Jerusalem, Israel ????) ??The Albinism International Databank Project Donna Appell (HPS Network, USA ????) and Karen BLY (National Organization for Albinism and Hypopigmentation - NOAH, USA ????) ??Griscelli syndrome in vitro model provides insights into melanin transfer pathways Duarte Barral (Lisbon, Portugal ????) ??Photoprotection of keratinocytes: Cytoskeletal mechanics in pigment organelle positioning Cédric Delevoye (Paris, France ????) ??Characterization of novel pH-sensitive probes of the melanosome Tyler WILLS (New York, NY, USA ????) ??Impact of the R356Q mutation on stability and function of human recombinant intra-melanosomal domain of TYRP1 Waleed Sabir (Bethesda, MD, USA ????) ??Human recombinant tyrosinase and OCA1-related variants reveal mutations' molecular destabilization mechanism Sarah TOAY (Bethesda, MD, USA ????) Another great session, chaired by Mickey Marks (Philadelphia, PA, USA) and Karen Gronskov (Copenhagen, Denmark) ISCA 2025 was held: ?? 100% online ?? January 21-24, 2025. ?? See Program at a glance and detailed program here https://lnkd.in/dR_Cc486 https://lnkd.in/epDaZCdt ?? All Main Sessions were recorded and remain available on-demand on the conference platform. For more information ?? Visit https://lnkd.in/eEtRuxWM ?? Contact the conference secretariat at isca2025@albinismalliance.org #ISCAlbinism #AlbinismResearch #Conference #Science #Research ISCA was organized by the Global Albinism Alliance in partnership with the Ern-Skin (funded by the European Union),? with the financial support of?The Vision For Tomorrow Foundation, IHU FOReSIGHT pour la vision (Fondation Voir & Entendre), The Vision of Children Foundation, the HPS Network and GlobalSkin - International Alliance of Dermatology Patient Organizations And with the organizational support of?National Organization for Albinism and Hypopigmentation - NOAH and GENESPOIR.

?? We are Proud to Support the WHA Resolution on Rare Diseases & Conditions ?? A major milestone in the process has now been reached: the #Resolution4Rare has been formally submitted for consideration by the Executive Board of the WHO. Read the draft Resolution here: https://lnkd.in/dPWcgRZd. ??A growing momentum from Member States has resulted in the Resolution now having a total of 21 co-sponsors: Egypt ????, Spain ????, Brazil ????, Chile ????, China ????, Ecuador ????, France ????, India ????, Iraq ????, Jordan ????, Kuwait ????, Luxemburg ????, Malaysia ????, Pakistan ????, Palestine ????, Panama ????, Philippines ????, Romania ????, Somalia ????, Qatar ????, and Vanuatu ????. ?? The more cosponsors we have, the better it is. We call on all Member States to support the #Resolution4Rare to improve the lives of Persons Living with a Rare Disease or Condition around the world! ?? Save the Date ! ?? Public Webinar on the #Resolution4Rare. ?? February 27th - Rare Disease Day ???Hosted by RARE DISEASES INTERNATIONAL (Coalition leader) ?? more details: https://lnkd.in/gkVVgJAX. ?? Online Registration: https://lnkd.in/ewyTe8e9. ??Join the Coalition in support of the WHA Resolution: https://lnkd.in/gW3x2BqC ??Persons Living with a Rare Disease or Condition continue to face challenges including delays in diagnosis, limited access to treatments and care, and financial burdens. A WHA Resolution on Rare Diseases & Conditions will aim to address these challenges through a comprehensive global framework that includes: ??raising awareness ??improving diagnosis ??enhancing access to care and treatment ??and fostering research and development of therapies. #Resolution4Rare #GlobalAdvocacy #Albinism #AlbinismAwareness