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We are continually committed to providing up-to-date information about TAPS – not only to our patients and families but also to other organizations that share a passion for rare disease awareness. We have partnered with many of these organizations, but we also work with any organization that needs our help to raise awareness.
NORD – Rarediseases.org
One of the world’s foremost rare disease databases is maintained by the National Organization for Rare Diseases (NORD). In May 2021, The TAPS Support Foundation was invited to help create an entry for Twin Anemia Polycythemia Sequence (TAPS) in their database.
Dr. Enrico Lopriore and Stephanie Ernst worked together to provide a Rare Disease Database Report TAPS targeting patients and families for NORD. Over several days, they worked on providing an up-to-date, well-referenced, factual entry for this important database. The resulting page was published soon after, and is now visible on rarediseases.org. Visit the page here: Twin Anemia Polycythemia Sequence on NORD
Patient Worthy is a rare disease awareness and advocacy publication that provides up to date, relevant information to patients, caregivers and advocates alike. Their passion for connecting rare disease patients means that their online magazine receives worldwide attention.
In May/June, 2021, we worked together with Patient Worthy to create a factual and up-to-date database entry on Twin Anemia Polycythemia Sequence for them. The resulting page is something we’re proud of, covering all aspects of a TAPS diagnosis. Visit their Twin Anemia Polycythemia Sequence page here.
Members of our advisory board are working on updates for the Orpha codes for TAPS, and related diseases. This is an ongoing project, and we will update when we can.
Rare Disease Databases
If you would like the TAPS Support Foundation to help you with updating your entries on Twin Anemia Polycythemia Sequence, and related diseases, please get in touch. We are happy to connect you with relevant experts and assist you.