Collaboration

Working Together

The Steffens Scleroderma Foundation supports and participates in educational events, conferences, and global summits in partnership with local, state, national, and international medical experts.

We collaborate with patients, researchers, physicians, and these key organizations and universities to strengthen our impact in rare disease research and education.

  • Albany College of Pharmacy and Health Sciences

    Advances rare disease research and education through pharmaceutical sciences and clinical training.

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  • Albany Medical College

    Conducts research and trains physicians to improve diagnosis and treatment of rare diseases.

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  • Boston University School of Medicine

    Conducts pioneering research and offers specialized education to advance understanding of rare diseases.

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  • Clemson University

    Conducts interdisciplinary research and education to advance understanding and treatment of rare diseases.

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  • Cornell University

    Integrates biology, health sciences, and research to advance understanding of rare diseases.

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  • Degos Disease Foundation

    Provides education, resources, and support for patients, caregivers, and healthcare professionals.

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  • National Institutes of Health (NIH)

    Leads groundbreaking research and funding initiatives to study and treat rare diseases.

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  • Nazareth University

    Prepares social workers to support individuals and families affected by rare diseases.

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  • Russell Sage College

    Offers health sciences programs that train professionals in rare disease care and advocacy.

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  • Siena College

    Emphasizes hands-on learning and service in healthcare fields, including rare disease studies.

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  • Tufts University

    Engages in interdisciplinary research and education to address rare disease challenges.

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  • UTHSC College of Medicine

    Engages in research and education to advance understanding and treatment of rare diseases. 

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  • Wingate University School of Pharmacy

    Trains pharmacists in specialized care and treatment options for rare diseases.

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Interprofessional Education Collaborative (IPEC)

In 2009, six national schools that were focused on the education of health professions, formed a collaborative to develop efforts that would guide curricula development, and advance interprofessional education (IPE). These organizations represent higher education in allopathic and osteopathic medicine, dentistry, nursing, pharmacy, and public health. 

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

The Interprofessional Education Collaborative (IPEC) now represents 21 national health professions associations. IPEC’s mission is to ensure that health professionals are proficient in the competencies essential for patient-centered, collaborative practice.

Eligibility is incumbent on member institutions providing programs leading to student academic degrees in at least one of the health professions providing direct patient care.

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In 2021, IPEC Interprofessional Leadership Development Program (ILDP) held a virtual event for deans and campus-wide leaders of IPE. This virtual professional development experience emphasized leadership in an interprofessional environment. At the event, there were 80-100 IPE participants from programs across the country.

The pandemic led to events being held virtually, opening up this educational source to a wider audience, leading to cross-country as well as international involvement. These events lead off with a panel of experts discussing the future of learning:

  • How to integrate IPE collaborative practice into health systems, universities and the community

  • Effective practices for outcome assessments: and how to address building coalitions and teams

In addition, breakout rooms were set up so that two patients, each with a different variation of scleroderma, could tell their stories directly to students, with the students then able to ask any questions that they may have, no matter how personal. The two patients to eight or nine student ratio allows for a sense of privacy so that students do not hesitate in their questioning.

This concept of interprofessional education led to the development of the ILDP, intended for deans or those who have equivalent responsibilities. 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.

Student Involvement

See how students are getting involved in the research of these rare diseases.

Rare Diseases

Learn more about the rare diseases we study, Scleroderma & Degos disease.