Background

Resolution 76/130 requests the Secretary-General to present to the General Assembly a report on the social development challenges faced by persons with albinism, taking into consideration the specific needs of women and children, including those related to social inclusion, health, education and employment, and measures taken, with recommendations for further action to be taken by Member States and other relevant stakeholders to address identified challenges. The forthcoming report will focus on relevant health issues.

All interested individuals and organizations including persons with albinism, representatives of civil society organizations and non-governmental organizations, experts and academics are invited to provide information on the social development challenges faced by persons with albinism, by completing the questionnaire below.

Such information, and any queries, should be sent electronically, as a Word document to the Office of the United Nations High Commissioner for Human Rights at: ohchr-registry@un.org, no later than 16 October 2023.

Questionnaire on social development challenges faced by persons with albinism

1. General
   1. How many persons with albinism live in your country according to the most recent national statistics? Please provide numbers or estimates and the source of information?
   2. How many of those people are women? How many are children, as defined in your country?
   3. Please describe the overall social and economic status of people with albinism in your country?
   4. Are there any public or private institutions in your country responsible for persons with albinism? If yes, please list the most important institutions.
2. National legal and policy framework
   5. Are there any national legal or policy frameworks concerning the issues of persons with albinism? If yes, please provide details and source of the relevant laws and policies? Also, please describe if and how these laws and policies take a non-discriminatory approach towards persons with albinism?
   6. Is albinism counted as a disability in your country? If yes, please provide details about specific provisions and key laws or policies on this issue.
3. Social development: Health
   7. How would you describe the health situation of persons with albinism?
      • Are dermatology and ophthalmology services readily available to them?
      • Is there information made available to them about health risks linked with albinism?
      • If so, how is this information disseminated and communicated?
4. Other Selected Social Development Issues

   • Education

     8. What is the educational situation of persons with albinism? Please provide statistics or other information regarding school enrolment/attendance/completion of persons with albinism of schooling age? Are there any obstacles for children with albinism to access education, and if yes, what are the major obstacles?
     9. Given the low vision issues present in most persons with albinism, does the school system in your country recognize such special needs and provide the required support and reasonable accommodation, for e.g., large print material, low vision, and assistive devices?

   • Employment

     10. What is the employment situation of persons with albinism? Please provide statistics or other information concerning employment and unemployment rate of persons with albinism, if applicable?
     11. What obstacles exist for persons with albinism in seeking paid employment in the open labour market?
     12. Are there any applicable laws or policies concerning the employment of persons with albinism? If yes, please provide details and source of the major laws and policies.
     13. Are there special measures in place to promote and integrate persons with albinism in employment and in the labour market?
5. Recommendations

   14. Please provide specific recommendations for further action to be taken by your Government and other stakeholders to address challenges to the full and equal participation of person with albinism in society and development?

6. Further remarks
   15. Would you have any further comments on the social situation of people with albinism in your country?

Further information

Respondents are requested to limit their contributions to a maximum of 2,500 words and to submit them by 16 October at the latest. Additional supporting materials, such as reports, academic studies, and other background materials may be linked in the body of the submission or annexed to the submission.

Please feel free to circulate this call for inputs widely in your networks.