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When I Understood the Importance of a Rare Disease Support Group

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I had never been to a support group before. When my mom was sick, she opted to create her own support system and forego joining a support group.

She chose to spend her time with her family and friends as much as possible. We had attended a large, organized event for pulmonary hypertension (PH) patients, which she found a bit overwhelming, and she decided it just wasn’t her thing.

Years later, my friend Steve asked me about going to the local support group. He was surprised to learn I had never been to one.

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