Rare Disease Management in the Clinic
Kris Ann Schultz1
1Children's Minnesota, Minneapolis, MN, United States

Synopsis

In this presentation, we will discuss approaches to children and adults with rare diseases in the clinical and research setting and review how collaboration with individual patients and families as well as international collaboration can improve outcomes. With the International PPB/DICER1 Registry as one example, we will discuss the use of disease-specific registries as one mechanism for data collation and dissemination, family education and research.

In this presentation, we will discuss approaches to children and adults with rare diseases in the clinical and research setting and review how collaboration with individual patients and families as well as international collaboration can improve outcomes. With the International PPB/DICER1 Registry as one example, we will discuss the use of disease-specific registries as a mechanism for data collation and dissemination, family education and research.

Acknowledgements

No acknowledgement found.

References

No reference found.
Proc. Intl. Soc. Mag. Reson. Med. 30 (2022)