Rewriting The Vitiligo Patient Experience: Minding The Gaps Of The Vitiligo Pathway
My name is Meshack Sisenda, and I was born and raised in Kitale, Trans-Nzoia County, Kenya. I am the only child with albinism in a family of three children, raised by a single mother after my father married a second wife in 2006. Growing up with albinism was not easy, as many people held […] February 13, 2025 On Wednesday, January 15, 2025, the newly published white paper titled: Rewriting The Vitiligo Patient Experience: Minding The Gaps Of The Vitiligo Pathway was presented to members of the European Parliament in Brussels, in the presence of a representative from the European Commission, a representative from the World Health Organization, and several parliamentary assistants.The paper […] February 5, 2025 Dear Friends, Partners, and Supporters, As 2024 draws to a close, I am filled with immense gratitude and inspiration for the journey we’ve all shared this year. Together, we have made tremendous strides toward our vision of ending discrimination and stigma and fostering a world of inclusion and understanding for individuals with albinism and vitiligo. […] January 12, 2025 The story of Massé World began with a vision to address the profound challenges faced by people with albinism and vitiligo in the United States, Africa, and Southeast Asia. These communities often experience deep-rooted social stigma, discrimination, and limited access to essential resources. Founded by individuals who recognized the urgent need for advocacy and support, […] December 27, 2024 2025 THEME. This theme embodies our steadfast commitment to empowering individuals with albinism and vitiligo to rise above societal barriers and celebrate their unique beauty and potential. It serves as a call to action to shift perspectives, confront biases, and create a world where acceptance flourishes and differences are valued. By means of innovative programs, […] December 27, 2024 Research on albinism is crucial for improving the quality of life, health, and social inclusion of individuals with this condition. By studying the genetic causes and visual impairments associated with albinism, such as nystagmus and reduced melanin affecting vision and skin protection, researchers can develop targeted treatments and interventions. Advances in understanding albinism also help […] December 8, 2024 Research on vitiligo provides significant benefits, advancing understanding of this complex autoimmune skin condition that causes patches of skin to lose pigment. By investigating the genetic, immunological, and environmental factors involved, researchers can develop more effective treatments and potential cures, improving quality of life for those affected. Additionally, research helps to raise awareness, reduce stigma, […] December 8, 2024 The Annual Open Enrollment for Medicare began on October 15 and ends on December 7, 2024 for coverage beginning January 1, 2025. The CSD, in partnership with the Medicare Access for Patients Rx (MAPRx) Coalition, has created a Medicare Part D prescription drug open enrollment guide and patient guide for our members, as well as an infographic. Congress recently made changes to […] October 28, 2024 Overview In 2022, the Member States of WHO South-East Asia Region committed to promote and facilitate access to community-based mental health services through the adoption of the Paro Declaration on universal access to people-centred mental health care and services (2). The adoption of this declaration was followed by the Mental health action plan for the […] October 10, 2024 The Masse World School Supplies Assistance Program eases the stress related to back to school. We provide school supplies to school age children within our demography. Even if they may not express it, children find comfort in the knowledge that they can rely on a bag filled with neatly arranged papers, pens, pencils, pencil sharpener, and […] August 2, 2024
My name is Meshack Sisenda, and I was born and raised in Kitale, Trans-Nzoia County, Kenya. I am the only child with albinism in a family of three children, raised by a single mother after my father married a second wife in 2006. Growing up with albinism was not easy, as many people held […] February 13, 2025 While we may speak on success and the impact that Massé World has on those around the globe, we seldom highlight the resilience and strength that people with albinism and vitiligo have when facing discrimination, bullying, and even abuse by their environment. A young girl who embodies strength and resilience is Ngo Block, or Merveille, […] February 28, 2024
Dear Friends, Partners, and Supporters, As 2024 draws to a close, I am filled with immense gratitude and inspiration for the journey we’ve all shared this year. Together, we have made tremendous strides toward our vision of ending discrimination and stigma and fostering a world of inclusion and understanding for individuals with albinism and vitiligo. […] January 12, 2025 https://rarediseases.org/organizations/masse-world/ February 9, 2024 Massé World is proud to announce its partnership with the Coalition for Skin Disease. This partnership will facilitate and promote better healthcare solutions for those affected with Albinism, Vitiligo, and other skin conditions. November 8, 2023 The Krupala family is proud to announce the birth of their second child, Brynne Krupala. Congratulations to Audrey and Brandon! November 8, 2023 Massé World is proud to announce that it is now a member of the Global Mental Health Action Network, a community of advocates, focused on building the political and social will to make mental health services accessible globally. October 20, 2023
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Meshack Sisenda Story
Rewriting The Vitiligo Patient Experience: Minding The Gaps Of The Vitiligo Pathway
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