Persons with Albinism
On International Albinism Awareness Day (13 June) 2019 the International Foundation for Dermatology (IFD) and Standing Voice launched the Manual of Best Practice: Skin Cancer Prevention and Management for Persons with Albinism in Sub-Saharan Africa.
Produced by Standing Voice in collaboration with the International Foundation for Dermatology and funded by Novartis and the Fondation Pierre Fabre, this Manual is the first-ever internationally recognised resource enabling clinicians to deliver effective quality care to patients with albinism, specifically targeting African contexts. It targets consultant dermatologists, surgeons, dermatology officers, clinical officers and nurses and largely draws on the experience of our programme personnel. It aims to consolidate current learning and drive improvements in clinical practice for professionals working to promote the dermatological health of people with albinism in Africa. As a user-friendly tool for change, the Manual will help us achieve faster and more reliable replication of the programme internationally. Its French translation will be explicitly mobilised for replication in Francophone countries.
The compilation of the Manual was led by the Chairperson of Standing Voice’s Skin Cancer Advisory Committee, Dr Andrew Sharp. Contributions were received from other committee members, and global health experts from Tanzania, Malawi, United Kingdom, USA and Spain.
Throughout 2018 the manual was field-tested during programmatic interventions in Tanzania and Malawi. In June 2019, it was presented to leading international stakeholders at the 24th World Congress of Dermatology in Milan and a major disability rights conference at the United Nations in New York.
Standing Voice’s Skin Cancer Advisory Committee is in the process of developing a training framework based on the Manual that will complement this resource. This framework will provide a clear guide and structure for how to train clinicians using our recommended and well-evidenced best practices for preventing and managing skin cancer in people with albinism. This standardised training material will be deployed to accelerate programme replication.
You can find more details about the work of Standing Voice on their website.