The Steffens Scleroderma Foundation supports and participates in educational events, conferences, and global summits in partnership with local, state, national, and international medical experts. Here are a few examples of such efforts:

  • ACR Convergence 2022 presents Patient Perspectives: The Journey to Collaborative Care and Patient-Centric Educational Opportunities for a Scleroderma Patient Virtual Speaker:  Amy Gietzen.

  • NSF ABSTRACT produced by Hannah Webber and Amy Gietzen titled: Utilizes the Interprofessional Education Concept to Improve Patient Empowerment as a means to Increase early Diagnosis for Individuals Living with Scleroderma

  • Degos disease presentation planned for the American College of Rheumatology 2020 meeting, Washington, D.C.
  • International Conference on Degos Disease at The National Institutes of Health, Bethesda, Maryland (April 27, 2018)
  • Rare Disease Day event to advocate and raise awareness at the NY State House, Albany, New York (March 2, 2016)
  • Tri-State Scleroderma Foundation presentation at the Scleroderma Foundation National Meeting by Dr. Lee Shapiro entitled “Scleroderma is a Vascular Disease Inside and Out,” Nashville, Tennessee  (2015) and New Orleans (2016)
  • “Medications in Scleroderma” presentation by Jessica Farrell, PharmD at the Scleroderma Foundation National Patient Education Conference, Chicago, Illinois (July 2019)
  • "Medical Info Toolkit: How to Find Reliable Medical Information on the Internet" presentation by Jessica Farrell, PharmD at the Scleroderma Foundation National Patient Education Conference,  Bellevue, Washington (2018)

Working Together

With collaboration being central to our success and effectiveness, the foundation actively collaborates with the following:

  • Degos Disease Support Network
  • National Institutes of Health
  • Albany Medical College
  • Albany College of Pharmacy and Health Sciences
  • The College of Saint Rose
  • The Sage Colleges, The School of Health Sciences
  • Rensselaer Polytechnic Institute, The School of BioMedical Engineering

Interprofessional Education Collaborative (IPEC)

In 2009, six national education associations of schools of the health professions formed a collaborative to promote and encourage constituent efforts that would advance substantive interprofessional learning experiences to help prepare future health professionals for enhanced team-based care of patients and improved population health outcomes. These organizations that represent higher education in allopathic and osteopathic medicine, dentistry, nursing, pharmacy, and public health created core competencies for interprofessional collaborative practice to guide curricula development across health professions schools.

Although the original 2011 panel focused its recommendations on the professions of medicine, nursing, pharmacy, dentistry, and public health, IPEC continues to engage multiple health professions in its efforts to guide curriculum development across health professions schools.

IPEC now represents 21 national health professions associations. Eligible institutional members must be associations that represent and serve academic units at institutions of higher education that provide an educational program leading to the award of one or more academic degrees to students in one or more of the health professions that provide direct care to patients. For more information about IPEC institutional membership, click here.

IPEC’s mission is to ensure that new and current health professionals are proficient in the competencies essential for patient-centered, community- and population-oriented, interprofessional, collaborative practice. To view IPECs strategic framework, click here.

IPEC is recognized by the Internal Revenue Service as a 501(c)(3) organization.

2021 IPEC Interprofessional Leadership Development Program (ILDP)

How will the events of 2020 shape the future of interprofessional education and collaborative practice?

Virtual Event Held - June 8-10, 2021

For deans and campus-wide leaders of IPE, the IPEC ILDP was a three-day, virtual professional development experience that emphasized leading in an interprofessional environment.  At the event, there were 80-100 IPE leaders from programs across the country.

2020 brought disruption to nearly every aspect of healthcare and higher education. In the U.S. alone, the number of Covid-19 cases exceeded 20 million, with the loss of life reaching into the hundreds of thousands. Hospitals, healthcare systems, and the providers who comprise them are stretched beyond capacity to meet wave after wave of patients.

The pandemic interrupted the education of millions of students around the world as higher education, often criticized for its slowness to change, transitioned to online and hybrid models of delivery. For countless businesses, higher education institutions, and families, the catastrophic economic consequences of the pandemic raise the basic question of survival.

The year 2020 also reinforced the horrible legacy of racism in the U.S., raising the consciousness of both individual and institutional responsibility to act for social justice and equality for all. 

The impact of 2020 will be long-lasting. Some disruptions will lead to a permanent change in higher education and in health professions education. The 2021 IPEC Interprofessional Leadership Development Program (ILDP) explored this impact through three lenses: the future of interprofessional education and collaborative practice (IPECP); making the case for IPECP after the events of 2020; and human flourishing in a world with a new perspective on diversity, equity, and inclusion.

For the first time, the ILDP will take place virtually. Interactive sessions will include:

·        The future of learning

·        Integrating IPECP into health systems, the university, and the community

·        Using scenarios to plan the future of IPECP

·        The leader’s role in building coalitions and teams

·        Effective practices for outcomes assessment

·        Building a culture of inclusion

·        Leading with the virtue of hope

In addition, the ILDP included a personal leadership assessment and four rounds of Showcase Breakout sessions in which participants discussed models of successful IPECP.

The ILDP is for deans or those who have equivalent responsibilities and campus-wide leaders of IPE. IPEC strongly encourages these leaders to attend the ILDP together. The program includes opportunities for deans and campus-wide IPE leaders to work together on goals important to their institution.

The ILDP was facilitated by the Academy for Advancing Leadership which includes internationally recognized IPE leaders.

Dr. Jeffrey Brewer is currently Director of Professional Affairs and Associate Professor of Pharmacy Practice at the Albany College of Pharmacy and Health Sciences.  Since completing his Doctor of Pharmacy at the University of Maryland, Baltimore, general and specialty residencies in the late 1990s, he has worked extensively in academic provider practices.  This interprofessional collaborative practice environment, with MDs, DOs, Nurse Practitioners, Social Workers, Nurses, Medical Assistants, and administrators, provides the perfect environment for the many learners who rotate through the office. He is responsible for collaborating within the College and without to create, find and nurture strong IPE experiences for his student pharmacists. He has received two awards for excellence in precepting, from the University of Maryland, Baltimore, and from the Albany College of Pharmacy and Health Sciences.  His scholarship includes communication difficulties between providers and empowering providers and patients to live their best lives through healthy communication and conflict resolution.

Close-Up on the 2016 Degos Disease Global Summit

Saratoga Springs, New York 
June 30, 2016  

image14.pngPatients and families affected by Degos Disease from around the world joined physicians and researchers in Saratoga Springs, New York on Thursday, June 30, 2016 for the Degos Disease Global Summit. This gathering aimed to raise awareness about this rare condition and to advance the development of a Degos Disease community.

“The goals of the summit were to build a Degos Disease community; raise awareness about the condition; and begin conversations that will help advance research, develop a patient registry, improve access to treatments, and educate and support those living with this rare condition,” explained Lee Shapiro, MD, rheumatologist and organizer of the Degos Disease Global Summit. “Serendipity, collaboration, and the willingness of others to work against the clock and against the odds to help save lives is what our story has been about. Our work has only just begun, but there is a lot of hope and momentum.”

Degos disease, also known as malignant atrophic papulosis, is a very rare illness that affects a person’s blood vessels. When cells in the linings of veins and arteries under the skin become inflamed and swell, this restricts blood flow, resulting in spots or lesions that appear on the skin. The spots on the skin first appear small, red rimmed with a white center, and raised, but over time flatten and become depressed. The blood vessels affected include those that supply the skin, eyes, gastrointestinal tract, heart, bladder, and central nervous system.

There is a spectrum of Degos disease progression. According to Dr. Shapiro, it starts on the skin and for an estimated two thirds of patients does not go beyond a cutaneous form. Approximately one third of cases become systemic, meaning that patients develop internal manifestations of the lesions, which can block blood vessels and result in a host of life threatening complications, such as bowel perforation and stroke.
Degos disease was first described in the early 1940s by a French dermatologist, but the cause is still not known. Treatments for the condition are limited, with no FDA-approved medications available for this indication.

image16.jpegThe Degos Disease Global Summit, presented by Steffens Scleroderma Center in partnership with the Patient Experience Project, included the following participants:

  • Families affected by Degos disease who came from various regions of New York State (eg, Albany, Manhattan, Long Island, and the Plattsburgh area), as well as from Pennsylvania, New Hampshire, Massachusetts, Canada, and England
  • Lee Shapiro, MD, Steffens Scleroderma Center at the Center for Rheumatology, Albany and Saratoga Springs, New York
  • Manfred Boehm, MD, National Institutes of Health, National Heart Lung Blood Institute
  • Aixa Toledo, MD, Center for Rheumatology
  • Jessica Farrell, PharmD, Albany College of Pharmacy and Health Sciences
  • Judith Calder, Degos patient, advocate, and founder of
  • Daniel Bobear, president and founder of the Patient Experience Project