SDS Specialists and Centers of Excellence
The SDS Alliance is committed to increasing the availability of clinical services for people with SDS and related conditions, decreasing the diagnostic odyssey, and increasing the standards and access to care.
Each Specialist and Center of Excellence is committed to providing exceptional care to the community through collaboration with patients and their families. They support this commitment by:
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Offering multidisciplinary care to manage a broad range of symptoms. Specialties include at a minimum hematology, genetics, and GI; additional specialties may include immunology, endocrinology, orthopedics, and psychology.
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Supporting the transition from pediatric to adult care
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Committing to diagnosing using internationally peer-reviewed criteria, including pursuing a genetic diagnosis and supporting sibling testing.
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Facilitating access to care and education for people in underserved communities, with a focus on DEI. This includes
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Offering telehealth access in all geographies where it is possible.
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Engaging in collaborative resource sharing and networking to improve patients’ access to care, including supporting providers new to the SDS field in areas that lack access to specialty resources.
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Contributing and participating in SDS research and facilitating the dissemination and application of advances, including
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Enabling processes for each patient to engage in research activities, including
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Encourage all patients to sign up for the SDS-GPS program (the only Global Patient Survey and Collaboration Platform, now available in 5 languages and counting)
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Commitment to evidence-based care and contributing to the research ecosystem where possible, including a commitment to data sharing and publishing
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Demonstrate ongoing commitment to continuing education
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Attending key professional conferences to teach and learn, including the biannual SDS Congress, ASH, and others
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A demonstrated commitment to community education, such as participation in SDS POPS - the annual virtual Patient advOcacy and Partnering Summit (SDS POPS) hosted by the SDS Alliance
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Participation in and/or organizing of multidisciplinary case discussions
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Where possible, provide training opportunities for students and healthcare professionals.
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To nominate a center or specialist, please email us at connect@SDSAlliance.org.
The list and map below are currently under construction. We have many more contacts around the world. Please reach out to us via email at connect@sdsalliance.org if you need assistance finding qualified SDS specialists near you.