Obtaining Support for Vitiligo: Support Groups and Patient Associations

As part of a campaign to build awareness around vitiligo, we are running a series of posts highlighting different experiences people have encountered whilst living with the condition. To hear real-life stories from people with vitiligo, follow us on our Facebook and Instagram channels.

Despite vitiligo being a common disorder, with it estimated between 0.5 to 2% of the world’s population having this condition, awareness around vitiligo is still limited. As a result, after being diagnosed with vitiligo, many people are left with more questions than answers.

For additional medical support, finding a physician who specialises in vitiligo is recommended. These specialists can help further assess your vitiligo and examine your medical history before suggesting a suitable treatment plan for you.

However, for day to day support, being part of support or patient association has shown to help many with their vitiligo journey. Research conducted by Zabetian et al. (2017) demonstrated the quality of life (QoL) of patients with vitiligo who had joined a support group for the condition was greater than those self-managing their vitiligo. Being part of a support group has shown to yield improvements in disease management, self-esteem, and an individual’s confidence.

These groups aim to provide support and resources to vitiligo patients beyond that provided by clinical care, ranging from communicating updates on research to the community through to advocating for treatment access and advising on camouflage techniques. Most often, it is simply by providing vitiligo patients and their families with an outlet to be heard that provides the greatest support, particularly in the early stages of the disease.

A list of some vitiligo support groups and patient associations can be found in the table below:

Name of Association Additional Description
The American Vitiligo Research Foundation (AVRF) The AVRF provides public awareness about vitiligo through dedicated work, education and counselling. The AVRF seeks to make a difference worldwide to those afflicted by the disease, focusing on children and their families.
AFB Association Francaise du Vitiligo Set up in 1991, the French Vitiligo Association works to inform, represent and bring together all people with vitiligo and their families.
AriV – Associazione Ricerca Informazione per la Vitiligine Italian Association for Research and Information for Vitiligo.
Deutscher Vitiligo-Bund e.V Portal of the German vitiligo self-help groups.

 

DVV Deutscher Vitiligo Verein e.V German patient association.

 

Global Vitiligo Foundation Community (GVFC)  The GVFC is an international foundation with a mission to improve the quality of life for individuals with vitiligo through education, research, clinical care, and community support.
The Netherlands Institute for Pigment Disorders

 

Publications and informative articles on a range of pigmentary disorders, including vitiligo.
Schweizerische Psoriasis und Vitiligo Gesellschaft (SPVG) The Swiss Psoriasis and Vitiligo Society.
Shweta Association India based patient run patient association. The association also visits schools in India to provide children with an education on vitiligo.
Svenska Vitiligoförbundet

 

Swiss Vitiligo Association (website in redevelopment).
Vitiligo Kids Set up in 2020, Vitiligo is a patient association aimed at children with vitiligo by children living with vitiligo. This education platform also hosts monthly zoom sessions for members.
Vitiligo Society Established in 1985, The Vitiligo Society is a charity that supports, inspires and educates about vitiligo. UK based, global reach.
The Vitiligo Support International, Inc. (VSI)

 

The international vitiligo patient run association based in the USA.
The Vitiligo Society of South Africa

 

Launched in 2008, it functions under the umbrella of the South African Dermatological Society.
Vitiligo Hungary An information and educational (for patients, parents, relatives, professionals, society) hub. Vitiligo Hungary supports research work and is committed to making the disease better known and accepted in society. They have also set up a Facebook group aimed at connecting people with vitiligo to one another.
VR Foundation

 

Vitiligo research foundation.
Vit Friends A USA based patient association aimed to connect people with vitiligo with one another.
Vitiligo Friends

 

An online community where those with vitiligo, their family, and friends can share information and keep in touch.
West Africa (Ghana and Nigeria)
The Vitiligo Support and Awareness Foundation (VITSAF)
The VITSAF is a patient–driven, patient-advocate organisation in Nigeria and passionately concerned about the Rights and Well-being of individuals living with Vitiligo primarily in Nigeria and Sub-Saharan Africa.
대한 백반증 협회입니다 The Korean Vitiligo Association.

 

Further Reading

VITILIGO COMMUNIQUÉ I: A scientific understanding of vitiligo.

VITILIGO COMMUNIQUÉ II: The role of narrowband UVB (NB-UVB) as the standard of care for vitiligo.

CLINUVEL’s YouTube Channel, The Photoprotection Network, has a dedicated series of education videos on vitiligo. To visit the series, click here.

 

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