Funding Research. Changing Lives.

The ARCI Initiative is a global nonprofit organization dedicated to improving the lives of people affected by Autosomal Recessive Congenital Ichthyosis (ARCI).

We invest in groundbreaking research that advances new therapies and, at the same time, support initiatives that help bring hope and care to patients and families around the world.

Current Initiatives

Explore the groundbreaking research we're funding, the scientists leading these efforts, and the impact your generosity is making for the future of ARCI.

The Advanced Therapies Initiative

The ARCI Initiative raises funds to support research into advanced therapies that aim to address the underlying causes of ichthyosis.

Our ambition is to help promising science move closer to patients. By bringing together researchers, clinical experts, patients and supporters, we aim to identify meaningful research opportunities and help fund the work needed to advance them.

One example is our collaboration with Epithelica, a biotechnology startup developing a potential gene therapy for TGM1-related ichthyosis. We are exploring opportunities to support this work, with any funding commitment subject to scientific review and a formal funding decision.

To make sure our investments go to the most relevant and promising research, we are building a scientific advisory board to help guide our research priorities and assess potential projects, with scientific quality and patient benefit at the centre of our decisions.

Our work begins with a clear goal: to help create a future with better, lasting treatments for people living with ichthyosis.

Help us take the next step. Support ichthyosis research.

The Global Ichthyosis Initiative

Connecting communities. Advancing research together.

Ichthyosis affects people across the world. Our ambition is to bring ichthyosis organisations, patient communities and researchers together in a shared effort to advance research towards better, lasting treatments.

Through The ARCI Initiative, we are building an international alliance where organisations can share knowledge, identify common research priorities and work together on awareness and fundraising. Each organisation retains its own identity while contributing to a shared purpose.

We want the experiences and needs of people living with ichthyosis to help shape the research we support, with the long-term goal of making effective treatments accessible to everyone who needs them.

We welcome organisations that would like to help build this collaboration.

Join the conversation. Help shape what we can achieve together.

Group of men and a young boy in traditional and casual clothes standing indoors, engaged in conversation. The boy is holding a folder and wearing gloves.
A young child with a skin condition that causes severe skin scarring and disfigurement, wearing a brown traditional dress with silver embellishments, standing with hands clasped.
A young child with a skin condition that causes severe skin scarring and disfigurement, wearing a brown traditional dress with silver embellishments, standing with hands clasped.
Child with a skin condition causing extensive, rough, patchy skin and visible scars, sitting on a hospital bed.
Child with a skin condition causing extensive, rough, patchy skin and visible scars, sitting on a hospital bed.
A person outdoors with severely dry, cracked, and peeling skin, wearing a brown cap and shirt, under a clear blue sky.
A person outdoors with severely dry, cracked, and peeling skin, wearing a brown cap and shirt, under a clear blue sky.
Logo of the Millat Sahara Foundation featuring stylized figures, stars, and open hands in a circular design with the organization's name to the right.

Current Collaborations

Millat Sahara Foundation (MSF) is a non-profit humanitarian organization committed to improving health and saving lives in vulnerable communities. They prioritize awareness, prevention, and care for children with rare genetic skin diseases such as ichthyosis and epidermolysis bullosa, especially in underserved regions of Pakistan and Afghanistan.

MSF also operates a voluntary blood bank to support thalassemia patients, ensuring timely access to lifesaving blood. In addition, we provide essential support to orphans and widows affected by serious health challenges. Together, we are saving lives and restoring hope.

This collaboration reflects our commitment to connecting research ambitions with the everyday needs of patients and families.

Read more about MSF
Four men, two with head coverings, are engaged in conversation. One young woman in the center holds documents and is dressed warmly, with a scarf covering her head.
A young child with a skin condition causing extensive scaly, reddish-brown patches covering the body, sitting on a bed with a dark background.
A young child with a skin condition causing extensive scaly, reddish-brown patches covering the body, sitting on a bed with a dark background.
Child with severe skin condition, dark patches, and possible scars, wearing a brown dress with decorative silver and black embellishments, standing indoors against a plain wall.
Child with severe skin condition, dark patches, and possible scars, wearing a brown dress with decorative silver and black embellishments, standing indoors against a plain wall.
A young boy outdoors with dry, cracked, weathered skin, wearing a brown cap and shirt.
A young boy outdoors with dry, cracked, weathered skin, wearing a brown cap and shirt.
Group of people standing in front of a banner that reads 'A STEP TOWARDS PEACE AND PROSPERITY IN KURRAM'.
Logo of Ikytys Foreningin, featuring text in purple and white with a stylized emblem.

We are collaborating with Iktyosföreningen, the Swedish patient organisation for ichthyosis, to raise awareness and connect with patients and families in Sweden. Together, we aim to strengthen patient voices and build support for research towards better treatments.

Read more about Iktyosföreningen

Want to collaborate?

Whether you are a researcher, patient organisation, company or someone who wants to help, we would love to hear from you.

Contact us