June 29 is World Scleroderma Day

DANVERS, Mass., June 29, 2022 /PRNewswire/ -- Each year on June 29 the National Scleroderma Foundation observes World Scleroderma Day as the punctuation of June's Scleroderma Awareness Month.  World Scleroderma Day highlights the need to increase awareness of scleroderma and to advocate for those affected by this life-threatening disease. June 29 was selected in 2009 by FESCA (Federation of European Scleroderma Associations) as World Scleroderma Day to commemorate Paul Klee, a gifted abstract artist who died of systemic sclerosis on June 29, 1940. A rare disease, there are some 300,000 people in the United States who have scleroderma. 

"Know Scleroderma" is the theme of the 2022 awareness campaign. Throughout the month of June, the Foundation has posted videos and photos of individuals affected by scleroderma on its Facebook, Twitter, Instagram, and LinkedIn social media accounts. The theme highlights the Foundation's belief that to know scleroderma is to understand the impact of a rare disease that is life-threatening for many and can cause physical disabilities and change lives forever. A special video will be posted on social media on World Scleroderma Day to amplify the need for scleroderma research and funding, to highlight the Foundation's resources for individuals affected by scleroderma, and to give voice to individuals affected by the disease. Featured in the video is recording artist Ashley Barron, who was diagnosed with localized scleroderma as a child and now serves as the Foundation's Celebrity Ambassador. 

The National Scleroderma Foundation's mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks. It's network of chapters and support groups provide opportunities for individuals with scleroderma to connect with each other. Its annual National Scleroderma Conference is the preeminent scleroderma education event that provides access to world renowned scleroderma experts and the latest in information about symptom management and scleroderma research.  The 2022 conference is virtual and takes place July 15, 16, and 17. To learn more, visit scleroderma.org/conference.

All are encouraged to join the scleroderma awareness campaign by sharing and reposting Foundation content on Facebook, Twitter, LinkedIn, and Instagram. To learn more about World Scleroderma Day and Scleroderma Awareness Month, visit www.scleroderma.org.

Scleroderma is a rare rheumatic disease that affects connective tissue and the vascular system causing an overproduction of collagen (fibrosis) in the skin (localized scleroderma), and the internal organs (systemic sclerosis), which can be life-threatening. Anyone can have scleroderma. The cause is not yet known and there is no cure. 

The National Scleroderma Foundation is a relentless force for people who have scleroderma as it advances medical research, promotes disease awareness, and provides support and education to people with scleroderma, their families and support networks. Its highly regarded peer-reviewed research grant program aims to discover the cause, understand the mechanisms, and overcome scleroderma forever. scleroderma.org

MEDIA CONTACT:
Steve Sookikian
[email protected]
(978) 624-1243

SOURCE National Scleroderma Foundation

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