VRF work at the UN
Vitiligo, among other several other debilitating skin diseases, is considered as a disability, and World Vitiligo Day is marked on the UN Calendar of Disability Events.
VR Foundation works across the United Nations to uphold the highest standards of the Convention on the Rights of Persons with Disabilities (CRPD), a landmark international treaty. It is a comprehensive human rights convention and international development tool, and is at the heart of the disability rights movement.
We believe this Convention is a real possibility for people with vitiligo have their existence and rights recognized by official representatives of a huge number of countries. Never before has there been such opportunity within the vitiligo community, and we are currently exploring frameworks and tools available to work for the benefit of people suffering from vitiligo worldwide. We also support different UN agencies to help ensure that the human rights of all persons with disabilities are an integral part of their work.
COSP to the CRPD
Convention on the Rights of Persons with Disabilities is a human rights treaty adopted by the UN General Assembly on 13 December 2006. The CRPD is a legally-binding agreement between Member States to protect the rights of persons with disabilities as defined in the treaty. To date 170 States, and the European Union, have ratified the Convention.
Article 40 of the CRPD stipulates that members shall meet regularly in a Conference of States Parties (COSP) to consider any matter with regard to the implementation of the Convention. Since 2008, the COSP has been held annually at the UN headquarters in New York, covering a range of themes and issues in round-tables, interactive dialogues and side-events.
The tenth session of the COSP to the CRPD took place at the UN in New York from Tuesday 13 to Thursday 15 June 2017, under the presidency of Bulgaria. Vice-Presidents represented Ecuador, Germany, Sri Lanka and Tunisia.
The overarching theme of the Conference was “The Second Decade of the CRPD: Inclusion and full participation of persons with disabilities and their representative organizations in the implementation of the Convention”.
VRF has actively participated in side-events sponsored by a variety of non-govermental and non-profit organizations:
- The Global Action on Disability (GLAD) Network: Coordinating action among the donor community (flyer)
- Youth with Disabilities-Inclusion, Participation and Rights.
- Monitoring and Evaluating Implementation of UN SDG and CRPD using Big Data and Text Mining Tools (website)
- Telling Our Stories: How film and videos can inspire as well as entertain (co-sponsered by Ability magazine)
- Defiant Lives – the rise and fight of the disability rights movement (Documentary Film)
- Decade of the Americas for the Rights and Dignity of Persons with Disabilities: Progress and challenges in the Americas
- Inclusive initiatives for persons with disabilities in the Americas within the framework of the inter-American convention on the elimination of all forms of discrimination against persons with disabilities.
CRPD marks a paradigm shift, where persons with disabilities are no longer viewed as objects of charity but as active members of societies, in charge of their own lives.
The Committee on the Rights of Persons with Disabilities is the body of 18 independent experts which monitor implementation of the CRPD, they meet in Geneva twice a year. All States Parties must submit annual reports to the Committee on how the Convention is being implemented. Upon examination of reports, experts create a List of Issues or Concluding Observations for the State Party to follow up.
The Committee is authorized to examine individual complaints of grave and systematic violations with regard to CRPD, as well as to undertake further inquiries. This UN body is qualified to review important issues related to violation of rights of people with skin disabilities.
VRF works to provide guidance and support to national vitiligo organizations by engaging in the state review process, making substantive inputs and disseminating information on current progress and opportunities. Our activities are now focused on the submission of written information and direct participation at the List of Issues stage, as well as in the lead up to the interactive dialogue.
I support the petition to designate June 25 as Vitiligo World Day and save millions of people worldwide from social isolation and persecution.
What is coming?
NY Vitiligo Community Meeting in September
Our next meeting will be on Thursday, September 21st, at 7PM - 8:30PM on the 11th floor of NYU's Ambulatory Care Center at 240 East 38th Street, between 2nd and 3rd Av...21 September 2017 19:00, 11th floor of NYU's Ambulatory Car...
Vitiligo Advocacy Day at the US Capitol
Save-the-Date for the much anticipated Vitiligo Advocacy Day at the United States Capitol this fall. As many of you know, the Advocacy Committee of the Global Vitilig...04 October 2017 10:00, Washington, DC
Can Scenesse be used for vitiligo treatment?
The drug Scenesse from Clinuvel has been tested in clinical trials in relation vitiligo. Profs. Henry Lim, Mark Lebwohl and coauthors reported (PubMed) results of mult...
Is it possible to stop the progression of vitiligo?
It is true that vitiligo progression could be stopped in 4 out of 5 cases by the use of potent systemic corticosteroids. However, systemic corticosteroids might ha...
I have vitiligo: will my children have vitiligo, too?
In some cases vitiligo seems to be inherited and run in families, with children whose parents have vitiligo being at increased risk of developing the condition themsel...
How can I cure vitiligo?
There is no cure for vitiligo, but there are a number of effective treatment options that can be discussed with your GP or dermatologist. The aim of treatment is to st...