Background

The Independent Expert on the enjoyment of human rights by persons with albinism, Ms. Muluka-Anne Miti-Drummond, will undertake a country visit to the United States of America and the territory of Puerto Rico from 7 to 18 October 2024. The visit will provide the Independent Expert the opportunity to assess the general human rights situation of persons with albinism and Heřmanský–Pudlák Syndrome (HPS) to determine good practices and initiatives that have been taken to support persons with albinism and Heřmanský–Pudlák syndrome. During the visit, she plans to meet with representatives of the federal and state governments, including executive departments and specialized institutions, and members of Congress. The Expert will also meet non-government stakeholders, including civil society organizations, academic and scientific community, representatives of albinism specific organisations as well as interact with activists and persons with albinism and Heřmanský–Pudlák Syndrome.

Objectives

The visit will allow the Independent Expert to meet with a broad range of stakeholders who can provide pertinent information that can ultimately assist in the drafting of recommendations to assist the Government and stakeholders to improve the human rights situation of persons with albinism. At the end of the visit, the Independent Expert will present an end of mission statement and/or press release containing her preliminary findings. The Independent Expert will present a detailed report of her visit to the Human Rights Council in March 2025.

Key questions and types of input/comments sought

Key questions and types of input required. Stakeholders wishing to contribute are encouraged to submit information relating, but not limited, to the following:

• Impact of social attitudes on persons with albinism and Heřmanský–Pudlák Syndrome, including on their social, economic and political life.

• Human rights challenges experienced by persons with albinism and Heřmanský–Pudlák Syndrome regarding right to adequate health, right to education, right to employment.

• Policy and legislative initiatives—both at the state and federal levels—aiming at addressing the human rights situation of persons with albinism and Heřmanský–Pudlák Syndrome.

• Measures or initiatives to support the particularities of persons with Heřmanský–Pudlák Syndrome, including access to health care.

• Information on the representation albinism and Heřmanský–Pudlák Syndrome in clinical research, including the development of medical products to help alleviate the syndrome as well as skin and vision related side effects of albinism.

• Range of services that provide support to persons with albinism and Heřmanský–Pudlák Syndrome and the challenges faced.

• Actions or initiative to educate and raise awareness about albinism and Heřmanský–Pudlák Syndrome the challenges faced by persons with albinism.

• Good practices that should be considered or which already exist relating to persons with albinism and Heřmanský–Pudlák Syndrome.

•Any pertinent information relating to persons with albinism and Heřmanský–Pudlák Syndrome in the U.S mainland and Puerto Rico, even if not specifically related to the issues mentioned above, can also be submitted.

How inputs will be used?

Please provide submission of inputs by 18 October 2024. Submissions will remain confidential and may be considered during the country visit or in the process of drafting the official visit report. No restrictions on length of submission provided.

Please provide your inputs as follows:

Email address: hrc-ie-albinism@un.org

Email subject line: Inputs for visit to United States of America

File formats: Word, PDF

Accepted languages: English, French, Spanish

Media inquiries

The Independent Expert will hold a press conference on 18 October 2024 at 13:00 EST at the O'Neill Institute for National and Global Health Law, Georgetown University Law School, 500 First Street Northwest Washington, DC 20001. Journalists and interested persons wishing to attend the press conference are advised to contact Mr. Adi Radhakrishnan (ar1673@georgetown.edu) at the O’Neil Institute, Georgetown Law School or Abou Jeng (jenga@un.org).