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New Year

What do you hope to see happen in the LAL Community in 2012? How can we reach more patients and families?

Started by Brett Billmeyer

0 Dec 29, 2011

Living with LAL Deficiency....now what?

I am 31 years old and I found out I had LAL Deficiency on November 15, 2011.  After years of various types of surgeries (gallbladder, appen…

Started by Melissa Aguilar

3 Dec 15, 2011
Reply by Melissa Aguilar

Misdiagnosed

Were any of you or your children misdiagnosed while waiting for the LAL Deficiency diagnosis? Gage's first diagnosis was Hirschsprung disea…

Started by Brett Billmeyer

0 Dec 15, 2011

Diagnosis

If you feel comfortable sharing, we would love to know how you or your family member was diagnosed with LAL Deficiency...either Wolman's Di…

Started by Brett Billmeyer

6 Nov 30, 2011
Reply by Melissa Aguilar

What is your experience with LAL Deficiency?

We look forward to hearing your story.

Started by Julia N

7 Nov 30, 2011
Reply by Melissa Aguilar

Thanksgiving

How has LALDeficiency (Wolman's or CESD) changed the way you celebrate the holidays? Have you had to make special meal plans because of it?…

Started by Brett Billmeyer

0 Nov 7, 2011

Rare Disease Day 2012

The last day of February each year is designated Rare Disease Day. It is recognized in the United States, Europe and other places around th…

Started by Brett Billmeyer

0 Aug 10, 2011

Study Participants Needed

Synageva is currently studying the natural history of early onset (Wolman Disease) LAL Deficiency.  The information from this study is very…

Started by Brett Billmeyer

0 Jun 20, 2011

Roadblocks

What roadblocks did you encounter trying to find a diagnosis?

Started by Brett Billmeyer

0 Jun 14, 2011

How is everyone doing?

Just wondering what the past few weeks has brought to your lives?

Started by Brett Billmeyer

1 May 10, 2011
Reply by Brett Billmeyer

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