Same Difference: Albinism and Vitiligo
The 2025 Coalition for Skin Diseases (CSD) Hill Day, held from May 18 to 20 in Washington, D.C., united over 75 patient advocates, healthcare professionals, and nonprofit organizations to champion the needs of more than 84 million Americans living with skin diseases. This flagship event focused on urging Congress to enhance access to dermatological care, […] May 29, 2025 – Audrey Krupala – My Name is Audrey Krupala. I’m a wife, mother, friend, daughter, and realtor. I’m 35 years old, and I’ve lived with vitiligo since I was 9. Growing up with this condition wasn’t easy. People could be cruel, and their words and stares often left me feeling isolated and unsure of my […] May 10, 2025 The BIO International Convention will take place from June 16-19, 2025, at the Boston Convention and Exhibition Center. This event is the largest and most comprehensive gathering for biotechnology, expected to host 20,000 industry leaders from around the globe, representing the full ecosystem of biotech. It serves as a platform for networking, showcasing innovations, and […] April 12, 2025 Chronic skin conditions are often impossible to ignore. Their visibility draws attention, but paradoxically, those affected often feel invisible. Despite the profound impact these diseases have, many patients are left without the recognition and support they need. Across Europe alone, 185 million individuals grapple with skin conditions, with nearly half of them experiencing at least […] March 16, 2025 BEN BROWN: A STORY OF PURE RESILIENCE My 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 request that I believe aligns with the values and mission of the 119th Congress, 1st Session’s mission. I grew up in Dickson […] March 5, 2025 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 between the Center for Biologics Evaluation and Research (CBER) and the Center for Drug Evaluation and Research (CDER) to enhance rare disease […] February 24, 2025 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
ONE VOICE: HILL DAY 2025
UNSHAKEN: A MOTHER’S STRENGTH BEYOND SKIN — “VITILIGO DOES NOT DEFINE ME”
The BIO International Convention : Boston, June 16-19, 2025
How to Improve the Vitiligo Patient Pathway: A Research-Based Book
EMBRACING MY HIGHER-SELF
FDA’s Rare Disease Innovation Hub Releases 2025 Strategic Agenda
Meshack Sisenda Story
Rewriting The Vitiligo Patient Experience: Minding The Gaps Of The Vitiligo Pathway
MASSE WORLD 2024 ANNUAL REPORT
From Shadows to Strength: The vision of Massé World in Championing – Acceptance and Empowerment
International Albinism Awareness Day 2025 – Cameroon
Reaction de Merveille
Meshack Sisenda
Reaction de Mama Christine la Mère de Merveille
Compte Rendu de la Visite de l’Équipe MASSÉ WORLD
Blessing Nabila
seigning Laurette
madame ETOUA EKABE carine enseignante et directri
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MOUZONG A Kessen fidèle Landry délégué département
MasseWorld Ben Brown
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Striking Reality – Albinism in Nepal
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Fight The Stigma With Michael McGowan
Living Well With Vitiligo – GVF 2023 Atlanta
Impact of Skin Disease 2
The GRIDD Study
Vitiligo: When the Immune System Attacks & Causes Skin Discoloration
Vitiligo, Causes, Signs and Symptoms, Diagnosis and Treatment.
More to Life – VITSAF Documentary on Vitiligo.wmv
World mental Health Day
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