Vitiligo

1. Disabilities and Human Rights
Of People With Chronic
Dermatological Diseases
Yan Valle, Chief Executive Officer
Vitiligo Research Foundation
501(c)3 Non-profit organization
Consultative member of the UN ECOSOC

2. Mission
“to accelerate the end of suffering
for millions of people with vitiligo”
We support, we educate, we care.
Open source research concept.
Vitiligo Research Foundation
501(c)3 Non-profit organization
Consultative member of the UN ECOSOC

3. The annual observance was proclaimed by the United Nations General
Assembly resolution 47/3 in 1992. The theme for this year is
“Transformation towards sustainable and resilient society for all”.
It aims to promote the rights and well-being of persons with
disabilities in all spheres of society and development, and to increase
awareness of on the situation of persons with disabilities in every
aspect of political, social, economic and cultural life.
International Day of Persons with
Disabilities, 3 December 2017

4. The media enforce disability stereotypes. People with disabilities are
rarely presented as people with their own identities. Disabled
individuals are portrayed in various negative, un-empowering ways:
• Pitiable or pathetic
• An object of curiosity or violence
• Sinister or evil
• The super cripple
• Laughable
• His or her own worst enemy
• Being unable to participate in daily life
A Stereotype Portrait Of A Disability

5. Various factors are used to determine the level of skin impairment:
• The nature of the skin condition. Skin conditions that scale, weep,
crust, bleed or that cause fissures or erosions.
• The symptoms presented. Skin conditions that cause discomfort or
pain.
• The extent of skin involved, as a percent of the Body Surface Area.
• The location of the lesion(s). In general, skin conditions of the face
and hands carry a higher impairment rating.
• The treatment required. Skin conditions that require systemic
treatment instead of or in addition to topical treatment.
Skin Diseases Are A True Disability

6. • Severe burns
• Severe dermatitis
• Bullous diseases
• Hidradenitis suppurativa
• Mucous membrane
infections
• Chronic skin infections
• Psoriasis
• Vitiligo
• Photosensitivity disorders
• Ichthyosis
• Cellulitis
• Dermatomyositis
• Shingles
• Gunshot wounds & scars
Permanent Skin Impairment
The U.S. Social Security Administration may recognize a skin
disability, if skin lesions are present for three months or more,
covering extensive parts of the body:

7. Disability Hate Crime
Hate crime laws protect five different minority groups on the
grounds of race, religion, sexual orientation, transgender and
disability.
In the UK, disability hate crime is considered a basic offence
(punishable up to 6 months), whereas race and religious hate
crimes are considered aggravated offences (up to 2 years).

8. What Does UN ECOSOC Do
To Protect Rights Of
People With Disabilities?

11. Convention on the
Rights of Persons with Disabilities
• The purpose of the Convention is to “promote, protect and ensure the full and
equal enjoyment of all human rights and fundamental freedoms by all persons
with disabilities, and to promote respect for their inherent dignity.”
• Persons with disabilities include those who have “long-term physical, mental,
intellectual or sensory impairments which in interaction with various barriers
may hinder their full and effective participation in society on an equal basis with
others.”

12. • Article 4 - General obligations:
To this end, States Parties undertake:
(a) To adopt all appropriate legislative, administrative and other measures;
(e) To take all appropriate measures to eliminate discrimination on the basis
of disability by any person, organization or private enterprise;
(g) To undertake or promote research and development of, and to promote
the availability and use of new technologies, suitable for persons with
disabilities;
(h) To provide accessible information to persons with disabilities, including
new technologies, as well as other forms of assistance.
(i) To promote the training of professionals and staff working with persons
with disabilities.
Convention on the
Rights of Persons with Disabilities

13. • Article 8 - Awareness-raising:
States Parties undertake to adopt immediate, effective and appropriate
measures:
(a) To raise awareness throughout society, including at the family level.
(b) To combat stereotypes, prejudices and harmful practices.
(c) To promote awareness of the capabilities and contributions of
persons with disabilities.
Convention on the
Rights of Persons with Disabilities

14. • Article 25 - Health
In particular, States Parties shall:
(a) Provide persons with disabilities with the same standard of free or
affordable health care and programmes as provided to other persons;
(b) Provide those health services, including early identification and
intervention as appropriate, and services designed to minimize and
prevent further disabilities;
Convention on the
Rights of Persons with Disabilities

15. Resolution (E/2014/26)
adopted by the ECOSOC
• 12. Encourages Member States, the United Nations system and all
relevant stakeholders
to improve disability data collection, analysis and monitoring
for development policy planning, implementation and evaluation, taking
fully into account regional contexts,
to share relevant data and statistics
with relevant agencies and bodies within the United Nations system,
including the Statistical Commission.

16. International Disability Events
• 4 January: World Braille Day
• 8 February: International Epilepsy Day
• 21 March: World Down Syndrome Day
• 2 April: World Autism Awareness Day
• 13 June: International Albinism Awareness Day
• 25 June: World Vitiligo Day
• 19-25 September: International Week of the Deaf
• 28 September: International Day for the Universal Access to Information
• 5 October: World Habitat Day
• 8 October: World Sight Day
• 10 October: World Mental Health Day
• 17 October: International Day for the Eradication of Poverty
• 3 December: International Day of Persons with Disabilities

17. VRF Master Class On Vitiligo
Held in Rome (Italy) on December, 2016, which led to inclusion
of the World Vitiligo Day to the UN Calendar of Disability Events

18. www.25June.org

19. 502,815 petitions received from:

20. Take home message
Identify, collect and report violations of the
UN Convention on the Rights of Persons with Disabilities,
including those related to skin health, through
Council of Human Rights, ECOSOC or NGO’s like VR Foundation

21. Thank you
for your attention!
Yan Valle
CEO VR Foundation
yan@VRFoundation.org