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BEN BROWN: A STORY OF PURE RESILIENCEMy name is Arthur Benjamin Brown, though my friends call me Brother Ben, and I am reaching out to you with a personal story and an important
The FDA’s Rare Disease Innovation Hub (Hub) has released its Strategic Agenda, detailing its first-year actions and engagement with the rare disease community while clarifying its structure and programs. The Hub fosters collaboration
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
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,
[caption id="attachment_9504" align="alignleft" width="159"] Massé World President's Message[/caption]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.
[caption id="attachment_9504" align="alignleft" width="159"] Raissa Levy, Founder & President Massé World[/caption] The story of Massé World began with a vision to address the profound challenges faced by people with albinism and vitiligo in
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
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
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
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
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