Understanding Scleroderma Tests

VIDEO: Nina Ramessar, M.D.

Are you wondering about a test your doctor ordered? Watch the Michigan Chapter's February webinar featuring Nina Ramessar, M.D., a rheumatologist and a Medical Advisory Board member for the Michigan Chapter. Dr. Ramessar covers the types of labs your rheumatologist might order, review the tests necessary for long-term monitoring, and explain terms that are confusing, but necessary, for the scleroderma community.

WATCH

Genome Research in African American Scleroderma Patients

Pravitt Gourh, M.D., is head of the Scleroderma Genomics and Health Disparities Unit of the National Institute on Minority Health and Health Disparities (NIMHD), which is within the National Institutes of Health (NIH). He became a Henry Metzger Scholar in Translational Medicine at the NIAMS and began studying the genetics of African American scleroderma. One of his current projects, the Genome Research in African American Scleroderma Patients (GRASP), is researching the largest cohort of African American scleroderma patients to identify genetic differences that increase the prevalence and severity of scleroderma in the African American population, which is an important health disparity. Gourh and colleagues have established the GRASP consortium, which is comprised of 25 centers across the United States. Its goal is to enroll African American scleroderma patients and perform admixture mapping to identify ancestry-specific variants contributing to increased disease risk.

READ

RARE Compassion Program

Offered by Global Genes, the RARE Compassion Program is a unique opportunity for medical students to develop relationships with patients and their families experiencing a rare diagnosis, with the goal of developing compassion and awareness for the challenges that patients diagnosed with a rare disease are faced with everyday. This program is committed to address inequities within the medical profession by pairing medical students and patients from under-served communities with the goals of fostering meaningful patient-doctor relationships, improving cultural congruence, and nurturing future advocates in rare disease.

READ

COVID SPIN-CHAT 

WEBINAR: Wednesdays at 7 p.m. Eastern Time

Thanks to the success of the SPIN-CHAT (COVID-19 Home-isolation Activities Together) Program, SPIN is offering 11 weekly webinars of SPIN-CHAT's educational segments! Webinars are held on Wednesdays at 7 PM Eastern Time (6 p.m. CT, 5 p.m MT, 4 p.m. PT) and cover a different topic related to coping during COVID-19, tailored to the needs of the scleroderma community. Join our engaging live expert talks and send us your questions during the Q&A period! Stay tuned by following us on social media: Facebook and Twitter. For more information, click here:

SPIN-CHAT

Portraits of Resilience

ONLINE February 11, 2021, 4-5 p.m. Eastern Time

What does resilience mean to you? Explore that question at “Portraits of Resilience," a live virtual story session February 11, 2021, hosted by Inspire and Health Story Collaborative, featuring patient advocates Estela Lugo and Chris Anselmo.

REGISTER

Dealing with COVID & Vaccines

ONLINE February 11, 2021, 3:30 p.m. Eastern Time

Scleroderma Canada presents a panel discussion on COVID vaccines, featuring panelists Dr. Janet Pope, Dr. Mark Larche, Dr. John Varga, and Maureen Suave.  Moderated by Dr. Brett D. Thombs. Send questions in advance to spingeneral@gmail.com.

ZOOM

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

Corporate Sponsors