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Scleroderma Foundation
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eLetter #909 | March 19, 2021  

2021 Virtual Scleroderma Conference image eLetter 72

2021 National Conference is Virtual

WEBINARS: July 17-18, 2021

The 2021 National Scleroderma Conference will take place virtually to provide valuable education and protect the health of individuals with scleroderma and all participants. The two days of workshops, panels, and speakers are Saturday, July 17, and Sunday, July 18. Registration, workshops, and speakers are being finalized. Stay in the know, subscribe to Conference eAlerts.

What do you want to learn about during the 2021 virtual National Scleroderma Conference? Please share your thoughts about the information you need to live your best scleroderma life. Email your topics today.

Please note that the July conference is for adults with scleroderma. The Kids Get Scleroderma, Too! (KGS2) conference will happen later this year. Make sure you stay informed, sign up for KGS2 eAlerts.

resources reading lap top

Ohio Virtual Education Day

WEBINAR: March 20, 2021, 9 a.m. - 12 p.m.Eastern Time

The Ohio Chapter will host a scleroderma virtual education day featuring three expert speakers on Saturday, March 20. This Zoom event is free, but registration is required. After registering, you will receive a confirmation email containing information about joining the meeting.

  • 9 a.m. - Dr. Sundar Balasubramanian, Yogic Breathing Demonstration
  • 10 a.m. - Dr. Ali Nawras, G.I. Complications in Scleroderma
  • 11 a.m. - Dr. Bashar Kahaleh, Research Update for Scleroderma: Why We Should Be Optimistic about the Future with Scleroderma

REGISTER

SYNC Meet Up 04-09-21

SYNC Meet-Up

VIRTUAL: April 9, 2021, 7 p.m. Eastern Time

The young adult group, SYNC (Scleroderma Young Adults Needing Connection), will hold a virtual meeting on April 9 at 7 p.m. To receive the meeting link, send an email to group facilitator Amy Gietzen.

LINK

Miami Bilingual Support Group COVID

El Grupo Bilingüe de Apoyo de Miami

ZOOM: 20 Marzo, 11 a.m. (Tiempo de Miami)

El Grupo Bilingüe de Apoyo de Miami de la Fundación de Esclerodermia está celebrando su reunión mensual virtual a través de Zoom el próximo 20 de marzo a las 11:00 am (tiempo de Miami), tendremos como expositores a la Dra. Elana Oberstein y Dr. Gustavo Carbone reumatólogos de la Universidad de Miami quienes trataran “La vacunación del COVID-19 en pacientes con esclerodermia”. Por favor envíe sus preguntas a miamiradgroup@gmail.com antes de la reunión.

REGISTRARSE

ATS 2021 Lung Disease Week 1

Pulmonary Hypertension and Scleroderma (PAH) MYTHBUSTERS

WEBINAR: March 24, 1 p.m. Eastern Time

Join a virtual roundtable discussion titled “Pulmonary Vascular Diseases Pulmonary Hypertension & Scleroderma MYTHBUSTERS.” This event is hosted by the American Thoracic Society (ATS) as part of “Lung Disease Week at the ATS” to facilitate information exchange between patients and experts on matters relating to lung and airway disorders. This is a collaborative effort among the ATS Public Advisory Roundtable (PAR), the Scleroderma Foundation, and the PH Aware Global Association.

The main speaker is pulmonary hypertension and scleroderma expert Stephen Mathai, M.D., M.H.S., associate professor of medicine at Johns Hopkins University. Other panelists are Marie Mascia Rand, executive director of PH Aware Global Association and Kerri Connolly, national director of programs and services at the Scleroderma Foundation.

REGISTER

SPIN CHAT

SPIN-CHAT

VIDEOS

The SPIN-CHAT webinar series has concluded. The remainder of the previously planned schedule will not be presented. 

Video recordings of the first five presentations are available on SPIN's YouTube channel at the link below.

VIDEOS

Ticket to Work - WISE

Work and Benefits

WEBINAR: March 24

If you receive Social Security disability benefits (SSDI/SSI), you probably have lots of questions about how work will affect your benefits. 

Join ChooseWork on March 24 as they answer some of your questions and tell you how you can get started with Social Security’s Ticket to Work Program!

CHOOSEWORK

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

Updated February 10, 2021

The American College of Rheumatology released clinical guidance on the COVID-19 vaccines. This information is available on the ACR website and has been added to the Foundation's website.

Information and frequently asked questions regarding the COVID-19 vaccines have been addressed by the Scleroderma Foundation's Medical & Scientific Advisory Board, to be used in consultation with your rheumatologist or other health care provider.

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

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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