Event Planning
Communications & Marketing
AsoNevus
AsoNevus is a Spanish association that brings together individuals and families affected by large or giant Congenital Melanocytic Nevus (CMN).
They work to raise awareness of CMN, improve medical care standards, and provide support, information and community to affected families — offering guidance, resources, and a space to share experiences and feel understood.
Impact Fund Project
The GlobalSkin Impact Fund enabled AsoNevus to strengthen their rare disease community by enhancing their 2025 Annual Meeting for individuals and families affected by congenital melanocytic nevus (CMN). Through the GlobalSkin Impact Fund's support, the event combined medical updates with tailored psychosocial sessions, workshops, and recreational activities that helped participants share experiences, build resilience, and reduce emotional isolation. Families connected deeply, children felt understood and less alone, and caregivers gained tools to manage stress. The fund made it possible to bring experts, support attendance, and create a meaningful, supportive space that remains a cornerstone of the CMN community.
The Biggest Success of the Project
Our greatest success has been sustaining our Annual Meetings for 23 years. These gatherings not only allow us to learn about new research and medical advances through invited professionals, but also to support each other and share the diverse realities of our families. It is the only moment in the year when our community comes together: children with CMN can normalize their condition, while siblings and relatives learn from other experiences. It is a unique space to meet, share, cry, laugh, learn, and listen—an experience that is truly fundamental for families.
To learn more about this organization, please visit:
Website: https://www.asonevus.orgFacebook: https://www.facebook.com/p/AsoNevus-Asociación-Española-de-Nevus-Gigante-Congénito-100054511208379/?locale=es_ES
Instagram: https://www.instagram.com/asonevus/
Standing Voice
Standing Voice is an international human-rights charity dedicated to defending and supporting people with albinism in Africa. They promote inclusion through education, health care, community programs, and advocacy - working to dismantle stigma, secure rights, improve access to medical and social services, and give people with albinism a powerful, heard voice.
Impact Fund Project
With help from the GlobalSkin Impact Fund, Standing Voice was able to build a modern, accessible website and produce a powerful short film that amplifies the voices of people with albinism and highlight the impact of their programs. This project transformed their ability to share stories, raise awareness, and engage a global audience, replacing an outdated site with a dynamic platform that finally allows their community to be seen, heard, and understood.
The Biggest Success of the Project
A major success of our project was the creation and screening of a short documentary amplifying the voices of persons with albinism and highlighting the impact of our work on our community. The film is featured on our new website, hosted on our Vimeo page, and was showcased during the first World Forum on Skin Cancer Prevention and Management for Persons with Albinism, which Standing Voice co-organised with the Global Albinism Alliance and International League of Dermatological Societies in October 2025. This screening was a project highlight, raising awareness and sharing the experiences of our community with a global audience.
To learn more about this organization, please visit:
Website: www.standingvoice.org
Facebook: https://www.facebook.com/standingvoice
Vimeo: https://vimeo.com/261101488?fl=pl&fe=sh
Instagram: https://www.instagram.com/standingvoiceuk/?hl=en
Organizational Development
Advocacy
Debra Australia
DEBRA Australia is a not-for-profit organisation dedicated to improving the lives of people living with Epidermolysis Bullosa (EB), a rare and painful genetic skin disorder. They provide vital support such as dedicated EB nurses, in-home nursing care, medical supplies and equipment, and a Family Support Program to assist patients and their families with day-to-day needs. DEBRA Australia also funds and promotes research into better treatments - and ultimately a cure - while raising awareness of EB among health professionals and the general public.
Impact Fund Project
With GlobalSkin Impact Fund support, DEBRA Australia developed its strategic plan through extensive stakeholder consultation, including Board members, staff, families, health professionals, researchers, and partner organisations. The process involved interviews, surveys, workshops, and strategy meetings to assess current operations, identify strengths and areas for improvement, and translate insights into actionable goals. The resulting 5-year strategy focuses on four pillars: Awareness Raising, Access to Care, Research & Education, and Information & Support, aiming to strengthen services and enhance the quality of life for people living with Epidermolysis Bullosa (EB) across Australia.
The Biggest Success of the Project
The biggest success of the project was that DEBRA Australia was able to create and implement a clear robust 5 year strategy which commenced in July 2025. With continued stakeholder input DEBRA will be able to future proof operations and continue to grow to meet the increasing needs for the EB community.
To learn more about this organization, please visit:
Website: www.debra.org.auFacebook: https://www.facebook.com/debra.aust
YouTube: https://www.youtube.com/user/DebRAAustralia
Instagram: https://www.instagram.com/debraaustralia
LinkedIn: https://www.linkedin.com/company/debra-australia
HUID Nederland
Huid Nederland is a coalition of patient-organizations for people with skin or hair conditions.
They advocate for better care, raise awareness, support peer-contact, provide education & resources, and represent patients’ interests to healthcare providers, insurers, and policymakers.
Impact Fund Project
With GlobalSkin Impact Fund support, Huid Nederland expanded their Skin@School program with a new international lesson on albinism, created in collaboration with South African dermatologists and people with albinism. The lesson provides accurate, age-appropriate information on albinism and sun protection while fostering understanding, inclusion, and empathy among classmates. Through deep engagement with the albinism community and participation in global forums, the team gained crucial cultural insights that strengthened the project’s impact. The grant funded the development of the English-language lesson, helping move Skin@School toward its goal of reaching children worldwide with stigma-reducing skin health education.
The Biggest Success of the Project
The biggest success of this project was being able to develop the lesson on albinism, while working directly with a lot of people living with albinism. It gave us insights in the lived experience and it also highlighted differences on a cultural level. We were also able to attend the World Forum on Skin Cancer Prevention and Management in Persons with Albinism, where we had a poster presentation and meetings with adults living with albinism. These meetings were a valuable addition to our research and taught us how we can better attune ourselves to the culture in African countries.
To learn more about this organization, please visit:
Website: www.huidnederland.com
Facebook: https://www.facebook.com/HuidNederland
Instagram: https://www.instagram.com/huidnederland/#
LinkedIn: https://www.linkedin.com/company/huid-nederland/posts/?feedView=all
2025 IMPACT FUND RECIPIENTS
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AsoNevus, Spain
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Nodular Prurigo International (NPI),U.K
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Canadian Skin Patient Alliance, Canada
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CORBETTA RDC, Democratic Republic of Congo
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Royal Patches, Kenya
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Psoriaisis Association of Ghana, Ghana
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Standing Voice, Malawai
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National Disabled Albino Nepal, Nepal
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Helping Hands, Pakistan
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Viligo Support and Research Group VITAMIGOS CUBA, Cuba
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Patients and Citizens Involvenment in Health, Zambia
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Eczema Outreach Support, U.K
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International Pemphigus & Pemphigoid Foundation, U.S.
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DEBRA Australia, Australia
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HEROIC ALOPECIAN FOUNDATION (HAF), Nigeria
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Huid Nederland (also known as Huidpatiënten Nederland), Netherlands
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ZEEVITILIGO NIGERIA SUPPORT COMMUNITY, Nigeria
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South African Psoriasis Association, South Africa
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Društvo Atopijski dermatitis, Slovenia
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Fundacion Padece, Chile
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Cross the Goal Foundation Inc, Puerto Rico
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Caring Matters Now, U.K
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Polskie Towarzystwo Chorób Atopowych, Poland
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Zavod Atopika, Slovenia
A total of 47 organizations representing 28 countries and 20 disease areas qualified for the Member Impact Fund 2025.
