LAL Solace Patient Community

LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support

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How long are your infusions?

Started this discussion. Last reply by Donna Lee Jan 11, 2017. 1 Reply 0 Likes

My daughter will be starting her Kanuma infusions soon, and I was just wondering how long the infusions are that you or your children receive, and if you've ever had any reactions.Thank you all for…Continue

Please sign my Petition

Started this discussion. Last reply by Lisa G Oct 19, 2015. 2 Replies 0 Likes

I just started the petition "HEALTH CANADA: Approve Sebelipase Alfa so that my daughters life can be saved." and wanted to see if you could help by adding your name.My goal is to reach 100 signatures…Continue

Canada

Started this discussion. Last reply by Lisa G Jan 18, 2017. 2 Replies 0 Likes

Hello Everyone,I am wondering how many people on here are from Canada. We are trying to find out whether or not our daughter is the only child in Canada with LAL D.Thank youContinue

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What brings you to LAL Solace?: Education, Support, Sharing, Research, All

Do you or someone you know have a LAL Deficiciency Disease?: Yes

If yes, who is effected by LAL Deficiency?: Child

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Comment Wall (5 comments)

At 10:47pm on February 7, 2016, Lisa G said…: Hi there, apparently I missed your response. Please let me know if the link does not work. https://www.change.org/p/health-canada-approve-sebelipase-alfa-so-that-my-daughters-life-can-be-saved

Thank you for your help, it is greatly appreciated.

At 1:29pm on February 27, 2016, Brett B. said…: Hi Lisa,

You may have already received this information, but if not, from what I understand they Alexion is still working with the Canadian government on getting Kanuma approved in Canada. The are and will continue to look for patients and families to speak about Kanuma and how it has affected patients in Canada. I hope to hear more about the process soon. As of now, I do not know what the timeline looks like.

At 7:36pm on February 27, 2016, Lisa G said…: Thank you for your ongoing help and support Brett, I really appreciate it.
I contacted one of our local radio stations and they posted our petition on their Facebook page and our local tv station has messaged me back to possible do a story. I am doing everything in my power to get this approved faster and bring awareness.

At 9:47pm on February 27, 2016, Rebecca Trendy said…: I signed it, and shared it on Facebook.

At 9:26am on February 28, 2016, Lisa G said…: Thank you Rebecca, I really appreciate it! : )