National Scleroderma Conference

Connecting Our Journeys, the 2022 Virtual National Scleroderma Conference
Connecting Our Journeys

National Scleroderma Conference

July 15, 16, 17, 2022

The Foundation held the 2022 virtual National Scleroderma Conference, July 15, 16, and 17.  The National Conference has long served as a vehicle to connect with others at various stages of their scleroderma journey.  That experience was reflected in our theme, “Connecting Our Journeys.”  The 2022 virtual conference included several live, interactive, and unique sessions to ensure that you have the chance to connect with your peers in a safe and fun manner.  For example, there will be a selection of virtual table discussions on different topics and a selfie booth.

Program

 

  • 30+ education sessions for the scleroderma community
  • Sessions included lung involvement, disease progression, GI & nutrition, Scleroderma 101, selfcare, and much more
  • Poster hall showcased current research in the space of scleroderma

Schedule

This is the preliminary schedule, and is subject to change.

Friday, July 15 (6 – 8:45 p.m.*), features welcome activities, breakout sessions, and the exhibit hall.  The highlight of the evening is a 6:30 p.m.* keynote presentation.

  • 6 – 8:45 p.m.
    • Welcome Address
    • Keynote Opening, Dinesh Khanna MD, MS
    • Networking and Social Opportunities
    • Exhibit Hall

Saturday, July 16 (12 – 8:30 p.m.*), is a full day starting at noon and ending at 8:30 p.m.*  The schedule includes a wide range of sessions in addition to the research poster hall and the exhibitor hall.

  • 12 – 1 p.m.
    • Poster Hall
  • 1 – 2 p.m.
    • Grand Lecture: The Lung in Systemic Sclerosis, Elizabeth Volkmann MD, MS
    • Grand Lecture: Localized Scleroderma, Heidi Jacobe, MD
  • 2 – 2:15 p.m.
    • Meet the Yoga for Scleroderma Team: How Yoga Has Helped Us, Yoga for Scleroderma
  • 2:15 PM – 3:15 PM
    • Scleroderma 101, Michael York, MD
    • Staying Active With Scleroderma Panel, Rachel Lando, RYT 200, E-RYT 200
    • What You And Your Dentist Need To Know About Scleroderma, David Leader,
      DMD, MPH, Luis Del Castillo, DMD
  • 3:15 PM – 4:15 PM
    • Exhibit Hall Unopposed Times (Exhibit Hall Open All Day)
  •  4:15 PM – 5:15 PM
    • What Is Preventative Care and Why Is It So Important, Tracy Frech, MD, MS
    • Taking Care of Your Hands and Face: “The Importance of Stretches, Assistive
      Devices and Protection”, Janet Poole, PhD, OTR/L
    • Music Therapy / Singing For Health, Erin Raber, MA, MT-BC
  • 5:15 PM – 5:30 PM Break
    • Staying Active With Scleroderma, Rachel Lando, RYT 200, E-RYT 200
  • 5:30 PM – 6:30 PM
    • Mental Health And Mindfulness, Nancy Lazar, LCSW
    • GI Involvement in Scleroderma: A Look Into the Microbiome & Promising
      Research, Elizabeth Volkmann MD, MS
    • Patients Educating Future Healthcare Professionals: The Art of Advocacy,
      Steffens Scleroderma Foundation
    • Pulmonary Arterial Hypertension in Systemic Sclerosis, Richard Silver, MD
  • 6:45 PM – 7:30 PM Open Discussion Breakout Rooms
    • Exercise Is Medicine
    • Men: The 20%
    • Yoga Is For Every Scleroderma Body
    • Newly Diagnosed
    • Caregivers Open Discussion
    • Young Adults Living With Scleroderma, Support Group Panel Discussion

Sunday, July 17 (12 – 5:15 p.m.*), is a shorter day, but no less full, starting at noon with a collection of educational sessions and access to the exhibitor hall.  The closing keynote speech is from 4:15 to 5:15 p.m.*

  • 12:00 PM – 1:00 PM
    • Clinical Treatment Trials: Are They Right For You, Maureen Mayes, MD, MPH
    • Medications in Scleroderma, Jessica Farrell, Pharm D.
    • Predicting Progression, Laura Hummers, MD, SCM
    • The Caregiver Experience, Nancy Rhodes, APRN-BC
  •  1:00 PM – 2:00 PM
    • The Heart In Ssc Q & A, Benjamin Freed, MD, FACC, FASE
    • Understanding Scleroderma Tests, Soumya Chatterjee, MD, MS
    • How to Get Involved in Advocacy for Scleroderma, Philip Goglas
    • Scleroderma in African Americans, Virginia Steen, MD
  •  2:00 PM – 2:15 PM
    • Let’s Talk Yoga, Q & A, Yoga For Scleroderma Team
  •  2:15 PM – 3:15 PM
    • Interstitial Lung Disease In Ssc, Kristin B. Highland, MD, MSCR
    • Navigating SSDI Benefits, National Social Security Disability Representatives
    • Skin Care In Scleroderma, Christina Lam, MD, Reina Gonzalez, MD
    • BIPOC Support Group Open Discussion
  •  3:15 PM – 4:15 PM
    • Exhibit Hall Unopposed Times (Exhibit Hall Open All Day)
  •  4:15 PM – 5:15 PM
    • Closing Keynote

*All times Eastern

Workshops, panel discussions, and other educational sessions were led by leading scleroderma researchers and healthcare professionals. Whether you are newly diagnosed or have had scleroderma for many years, the National Scleroderma Conference is a great way to learn about the disease and to connect with others who are coping with scleroderma.

Questions about the National Scleroderma Conference should be directed to info@scleroderma.org, or (800) 722-4673.

The Conference is for adults with scleroderma. Programming on pediatric scleroderma is presented separately in the Kids Get Scleroderma, Too!, (KGS2) Conference. KGS2 is for children and teens who have scleroderma and their adult caregivers. 

The National Scleroderma Conference featured a range of educational workshops presented by leading experts in their field that follow the different pathways that a person with scleroderma might experience. For example, newly diagnosed was one area of emphasis. Symptom management was another focal point for those who have been living with scleroderma for some time. Certain presentations were relevant to those who have localized scleroderma and others to those who have systemic scleroderma. And, there are sessions on research to keep you up to date on the latest results. As an example of the programming, below is a link to the 2021 schedule of virtual workshops. This page has programming information about the 2022 conference.

 

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