National Scleroderma Foundation

Scleroderma Foundation

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eLetter #921 | June 11, 2021

	Awareness Month: Connected When Erion Moore moved to California, he connected with the Scleroderma Foundation Southern California Chapter to attend support groups. Then, when he moved to Oregon, he connected with the Oregon Chapter and started frequenting those support groups. Wherever our community needs us, the Scleroderma Foundation is there. During Awareness Month, visit the Foundation's social media sites. Share and retweet to help others in your network understand scleroderma, and please include #SclerodermaAwareness in your posts. FACEBOOK • TWITTER • INSTAGRAM
	Connect & Thrive Together at the Virtual National Scleroderma Conference July 17 & 18, 2021 - REGISTER TODAY Sign up today for the virtual conference and get the same access to scleroderma experts and to others affected by scleroderma as you would in person. Connect and thrive together. Register today (rates increase July 9): Person Living with Scleroderma $30 General Admission $50 Business/Academia $125 Members receive a 29% discount code. scleroderma.org/becomeamember. REGISTER We are grateful for our generous sponsors: Presenting Sponsor: Boehringer Ingelheim Corporate Partner: Talaris Therapeutics Partners: Horizon Therapeutics, Genentech
	Scleroderma Awareness Live Q&A FACEBOOK LIVE: Thursday, June 17, 2021; 3 p.m. Eastern Time Join the South Carolina Chapter and rheumatologists from the Medical University of South Carolina (MUSC Health), Richard M. Silver, M.D., and DeAnna Baker-Frost, M.D., Ph.D., for a Facebook Live Q&A regarding scleroderma. ATTEND
	Black and Rare: Scleroderma in the African-American Community WEBINAR: Tuesday, June 29, 2021, 1 - 2 p.m. Eastern Time Save the date for the "Black and Rare: Scleroderma in the African-American Community" webinar on World Scleroderma Day, June 29. Presented by the Black Women’s Health Imperative’s (BWHI) Rare Disease Diversity Coalition (RDDC), the webinar features experts who will unpack the clinical knowledge gathered around scleroderma, how the disease affects the African-American community, and ways to mobilize stakeholders to ensure that Black patients get the best treatment and care available. The webinar will include individuals who have scleroderma and the following guest speakers: Christopher S. King, M.D., Inova Medical Group Robert J. Riggs, CEO, Scleroderma Foundation Virginia Steen, M.D., Chair, Medical & Scientific Advisory Board, Scleroderma Foundation The RDDC was formed to address the challenges that marginalized populations face when seeking diagnosis and accessing treatment for rare diseases. Spearheaded by BWHI and comprised of a group of healthcare non-profits, patient advocacy groups, and industry experts; the RDDC aims to educate and empower rare disease patients of color, reduce the time between the onset of symptoms and diagnosis, eliminate racial bias in the healthcare system and increase BIPOC (Black, Indigenous, and People of Color) participation in rare disease clinical trials. Black Women’s Health Imperative Rare Disease Diversity Coalition
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	Para Información Sobre COVID-19 El Comité Directivo del Consejo Médico y Científico Asesor de la Fundación Esclerodermia está de acuerdo con las recomendaciones de los CDC para aquellos que tienen una afección o toman medicamentos que debilitan el sistema inmunitario. Estudios recientes sugieren que para las personas inmunocomprometidas, en particular las que toman micofenolato mofetilo, la vacuna puede tener una eficacia inferior al 50%. Por ello, ponen énfasis en recomendar que las personas diagnosticadas con esclerodermia/esclerosis sistémica que reciban terapias inmunosupresoras como el micofenolato mofetilo y el rituximab, así como quienes convivan con ellas, sigan utilizando mascarillas, practiquen el distanciamiento social, eviten las aglomeraciones y los espacios interiores poco ventilados y sean diligentes en el lavado frecuente de manos. Lee Mas
	Important Updates Regarding Mask Wearing for Immunocompromised Individuals with SSc Updated May 17, 2021 With the recent CDC announcement of new guidelines on mask wearing, the Scleroderma Foundation's Medical & Scientific Advisory Board issued the following statement: The Scleroderma Foundation’s MSAB Leadership Committee agrees with the CDC guidelines for those who have a condition or are on medications that weaken the immune system. Recent studies suggest that immunocomprimised people, particularly those on mycophenolate mofetil, may have had less than 50% effectiveness of the vaccine. Thus, they strongly recommend that people diagnosed with scleroderma/systemic sclerosis who are receiving immunosuppressive therapies such as mycophenolate mofetil and rituximab and those who live with them should continue to wear face masks, practice social distancing, avoid crowds and poorly ventilated indoor spaces, and use diligence in frequent hand washing. These guidelines, along with more information and recommendations for individuals affected by scleroderma about COVID-19 are posted at scleroderma.org/covid19. Please check this page from time to time for updates. COVID‑19
	SYNC Meet Up ZOOM: Friday, June 11, 2021, 7 p.m. Eastern Time Young adults with scleroderma, ages 18 to 42, are invited to join the SYNC Meet Up (Scleroderma Young Adults Needing Connection). For more details, email sdtristate@sclerodermatristate.org or agietzen@scleroderma.org. See you then! REGISTER
	Showcase Your Business at Conference Don't miss the opportunity to showcase your organization's programs, products, or services at the 2021 National Scleroderma Conference, "Connect & Thrive Together." This all-virtual event is July 17-18, 2021, attracting hundreds of people living with scleroderma, their family members and caregivers, and the world's leading scleroderma healthcare professionals and researchers. Visit the exhibitor page on the Conference website today to learn how to claim your virtual booth in the exhibit hall! EXHIBITORS
	7.10 Chronic Disease Day With preventable illness reaching a tipping point, chronic disease community members with rare and unpreventable conditions continue to suffer from lack of attention and resources. Chronic Disease Day raises awareness so that we can flip this dynamic. Chronic Disease Day promotes everyday wellness and caregiving for ourselves and each other. Let’s work together to lower the number, build healthier communities, and better support those with unpreventable conditions. CHRONIC DISEASE DAY