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Re: MELD

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Laurie & Everyone,

Recently I had an opportunity to talk with Dr. Pramoud Mistry, he is director of pediatric hepatology at Yale Medical Center, about this topic. He feels PSC patients need to petition UNOS for an exception to the MELD . He said this support group is perfect for this. He mentioned another rare pediatric liver group that successfully accomplished this, unfortunately I don't remember which disease group but I can ask.

Wouldn't it be great if this group and PSC Partners organized around this issue? I suggest we come up with a plan. Let's brain storm. Grassroots groups have accomplished many things against great odds, I don't see why we can't do this too.

Regards,

Reggie

Jecy's Mom

UC/PSC-1996

I justed wanted to mention some odd facts regarding PSC.My husband's MELD even now has stayed between 13 and 15How can he be so sick at just this score___

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Tell me what to do!!

Dawn

>

>  Laurie& Everyone,

>

> .  He feels PSC patients need to petition UNOS for an exception to

the MELD .  > Regards,

>

> Reggie

> Jecy's Mom

> UC/PSC-1996

>

>

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