From Muscle Weakness to the Diagnosis of a Rare Disease
Enabling actions from physicians and improving disease recognition is challenging, especially for rare conditions.
Enabling actions from physicians and improving disease recognition is challenging, especially for rare conditions.
Asking healthcare providers to change the way they practice is not an easy task. What about paying them to change?
At the beginning of 2021, as we harnessed the power of reflection, we pondered a question: Does rare disease education equate to rare attendance? Our answer is obviously no, but how?
On March 7, 2020, we flew to Ohio for an educational event on hypophosphatasia, not realizing that it would be our last trip in 2020 due to COVID.
No seat was available when the P2P Syncro team entered a breakout session at the Alliance Annual Conference on January 9, 2020.
We had a busy time at the National MPS Society Conference, talking to patients and experts in sunny Florida in December 2019.