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Scleroderma Foundation
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eLetter #904 | February 12, 2021  

 Rare Disease Day 2021 graphic 1

Rare Disease Day is February 28

Rare Disease Day means equity for people living with a rare disease. On Rare Disease Day, the Scleroderma Foundation joins with other rare disease organizations to call for action for people living with a rare disease to have equal opportunities to realize their potential for participation in family, work, and social life. The long-term goal of Rare Disease Day over the next decade is increased equity for people living with a rare disease and their families.

LEARN

NORD Share Your Story 2021

Share Your Story of Diversity & Equity

The National Organization for Rare Disorders, Inc. (NORD) invites you to share your story! They are looking for individuals and families to share their stories about diversity and equity in rare disease. To submit your story, please visit the NORD website and select "Rare Disease Day" from the drop-down menu.

SHARE

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African Americans and Scleroderma 

Among all African Americans, 23.7 people per million are diagnosed with systemic sclerosis, while the comparable rate among non-African Americans is 18.3 people per million diagnosed. We see a similar pattern when looking at the prevalence of 315 of every one million African Americans diagnosed with systemic sclerosis. In contrast, 225 of every one million non-African Americans are diagnosed with systemic sclerosis. Learn more about scleroderma and African Americans on the Scleroderma Foundation's website.

LEARN

Sydney Montesi MD

ATS 2020 BEAR Cage Winner

Sydney Montesi, M.D., of Harvard Medical School, Massachusetts General Hospital is the 2020 winner of the American Thoracic Society's annual "BEAR Cage" (Building Education to Advance Research) competition with her research proposal, “Collagen-Targeted PET Imaging as a Novel Biomarker of Treatment Response in IPF.” BEAR Cage is a "Shark Tank"-style live pitch session for early career investigators to share their research and innovative ideas with veterans of translational science in the areas of academia, industry, and government. In 2018, Montesi received the Scleroderma Foundation's Marta Marx Fund for the Eradication of Scleroderma research grant award for her project, "Using Lung MRI to Assess Disease Activity in Scleroderma-Associated Interstitial Lung Disease."

READ

SPIN CHAT

SPIN-CHAT: Relaxation Techniques (Part I)

WEBINAR: Wednesday, February 17, 7 p.m. Eastern Time

The SPIN-CHAT (COVID-19 Home-isolation Activities Together) Program continues its 11-week webinar series related to coping during COVID-19, tailored to the needs of the scleroderma community. The February 17 session features Ghassan El-Baalbaki presenting the first of a two-part program on relaxation techniques. 

SPIN-CHAT

 Zoom virtual support group lap top

Grupo de Apoyo Bilingüe Español/Inglés
Spanish/English Bilingual Support Group

Grupo De Apoyo Bilingüe De Esclerodermia De Miami
Quieres participar y conocer a otras personas viviendo con Esclerodermia? Para mas informacion sobre fechas de reuniones contactar a Monica Ramirez: miamiradgroup@gmail.com, (786) 300-1242.

Miami Bilingual Scleroderma Support Group
Do you want to meet and engage with other people living with Scleroderma? For more information on meeting dates contact Monica Ramirez: miamiradgroup@gmail.com, (786) 300-1242.

SUPPORT GROUPS

MSAB COVID-19 eLetter Graphic

COVID‑19 Information & Recommendations

Updated January 8, 2021

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

myPHteam nobody gets it

Pulmonary Hypertension

Are you living with pulmonary hypertension? Have unfiltered conversations about the best ways to manage and live with PH on myPHteam.

myPHteam

Ticket to Work WISE ChooseWork Looking for a Job

Looking for a Job?

WEBINAR: February 24, 2021, 3 p.m. Eastern Time

Looking for a job? Curious about the different ways to find a job? If you receive Social Security disability benefits, discover FREE employment supports available through the Ticket to Work program that can help people with disabilities create a career. 

Join ChooseWork for the next Work Incentive Seminar Event (WISE) webinar on February 24 at 3 p.m. ET to learn more apprenticeships, working for the federal government, and how Ticket to Work can help you advance your job search.

REGISTER

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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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