LAL Solace

LAL Solace We are the support group for Lysosomal Acid Lipase Deficiency. This group is made up of parents, patients and professionals directly affected by LAL D.

SOLACE stands for Support Organization for LAL Deficiency - Advocacy, Care & Expertise. The SOLACE organization was created by parents whose children were diagnosed with Wolman's Disease who realized there was a need for a caring support community.

Mission: Our mission is to provide support for patients and families of early and late onset LAL Deficiency (Wolman Disease and Cholesteryl Ester Storage Disease, CESD), a rare and devastating disease, and their providers of healthcare.

Photos from LAL Solace's post
09/22/2016

Photos from LAL Solace's post

We are pleased to share that our friends at Alexion have created an official page to support those impacted by ...
08/11/2016
LAL-D Source

We are pleased to share that our friends at Alexion have created an official page to support those impacted by LAL-D! Please check it out, and “like” the page to gain access to great information and resources! https://www.facebook.com/laldsource/

LAL-D Source is sponsored by Alexion to help raise awareness of Lysosomal Acid Lipase Deficiency (LAL-D) - a life-threatening genetic rare disease

07/22/2014

LAL Solace is gearing up for the rest of 2014 and 2015. We have some exciting times to look forward to. What do you hope the Lysosomal Acid Lipase Deficiency Community will achieve in the coming year??? What would you like to see from LAL Solace? Send us your thoughts. We will be meeting this weekend to discuss various ways we can help the LAL community.

This is a GREAT resource for all of us!
12/05/2013

This is a GREAT resource for all of us!

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http://globalgenes.org/facebook-group-request

Current Groups:
* Parent Advocates of Rare Kids
* Self Advocates (Patients who advocate for their condition)
* Bereavement Group for Mothers who have lost children to rare disease (children under age 21)

Thank you to the hundreds of members of our Facebook community who have already joined our private support groups on Facebook! We are thrilled that so many people are finding an opportunity to share their feelings, vent their frustrations, and learn from each other through these groups.

~ More groups will be added in the future. You will have the opportunity to suggest future groups on the registration form.

12/05/2013

LAL Solace is gearing up for 2014. What do you hope the Lysosomal Acid Lipase Deficiency Community will achieve in the coming year???

Check it out...you can now view www.lalsolace.org in almost any language!!!!
10/09/2012
LAL Solace Patient Community

Check it out...you can now view www.lalsolace.org in almost any language!!!!

LAL Solace is an online support group to help patients with LAL Deficiency (Lysosomal Acid Lipase Disease) and Wolman Disease.

I traveled to Florida last week to talk about LAL Deficiency on The Balancing Act! It will air November 19th on Lifetime...
10/01/2012

I traveled to Florida last week to talk about LAL Deficiency on The Balancing Act! It will air November 19th on Lifetime. What other ways can we raise awareness for LAL?

We’re joined on set with internationally renowned physician, Dr.Olaf Bodamer, and mother, Mary Pruitt for our new series “Behind the Mystery: Rare and Genetic Diseases” to help build awareness for the rare disease, Lysomal Acid Lipase Deficiency (LAL). Tune in Nov. 19 on Lifetime to hear Mary’s personal story with LAL & how you can get involved!

Our website www.lalsolace.org is currently down due to GoDaddy (our web host) being hacked today. Hopefully they will ge...
09/10/2012
LAL Solace Patient Community

Our website www.lalsolace.org is currently down due to GoDaddy (our web host) being hacked today. Hopefully they will get it fixed soon!

LAL Solace is an online support group to help patients with LAL Deficiency (Lysosomal Acid Lipase Disease) and Wolman Disease.

Check this out...LAL Solace will be at this event.
08/29/2012

Check this out...LAL Solace will be at this event.

Check out the trailer to a new rare disease documentary that is set to be released by the Kauffman Foundation.

Shocking stat: Did you know that of the 7,000 rare diseases that affect 30 million American's and 350 million people worldwide, there are only treatments for 500 of these rare diseases?

We're screening the film Sept. 28th in Hollywood - the day following our Tribute to Champions Gala.

http://globalgenes.org/here-us-now-film-by-kauffman-foundation-details-daunting-realities-of-rare-disease-drug-development/

07/08/2012

Missing by beautiful, sweet son Gage. He passed away three years ago today from Wolman's Disease.

07/03/2012

How is everyone spending their Fourth of July this year? We are in the middle of a drought and having daily temps around 110 degrees! So we will be staying inside!

06/24/2012

IMPORTANT new survey posted on www.lalsolace.org! If you are a member of the Persian Jewish Community, we are seeking YOUR input! We want to better serve anyone and everyone affected by Wolman's Disease and/or Cholesterol Ester Storage Disease. Please take a moment of your time to help us by taking a short survey....we need ALL of the input we can get to help the LAL Community. Thank you in advance!!!

06/08/2012

Come on guys...surely somebody wants a bracelet!!!

Attention Members of the Persian Jewish Community...there is a CRITICAL survey that we would LOVE for you to participate...
05/31/2012
LAL Solace Patient Community

Attention Members of the Persian Jewish Community...there is a CRITICAL survey that we would LOVE for you to participate in. It is at www.lalsolace.org. Please take a few minutes to help us with this invaluable information!

LAL Solace is an online support group to help patients with LAL Deficiency (Lysosomal Acid Lipase Disease) and Wolman Disease.

We still have plenty of bracelets to give away! Just go to www.lalsolace.org and click on the bracelet giveaway link!
05/28/2012
LAL Solace Patient Community

We still have plenty of bracelets to give away! Just go to www.lalsolace.org and click on the bracelet giveaway link!

LAL Solace is an online support group to help patients with LAL Deficiency (Lysosomal Acid Lipase Disease) and Wolman Disease.

Global Genes
05/14/2012

Global Genes

Trying again as last image too small to read. Agree or disagree?? what would you change about this image for rare and genetic disease. We're thinking of creating a graphic.

05/11/2012

Congratulations to our Board Secretary Stephanie Dykes (Dakota's mom) on graduating from Nursing School! We are so proud of you!!!

We still have LAL Solace bracelets to give away! Come on over to our site www.lalsolace.org and share your story!
05/07/2012
LAL Solace Patient Community

We still have LAL Solace bracelets to give away! Come on over to our site www.lalsolace.org and share your story!

LAL Solace is an online support group to help patients with LAL Deficiency (Lysosomal Acid Lipase Disease) and Wolman Disease.

04/18/2012

Melissa Aguilar...please check your private messages on lalsolace.org. Someone very important wants to talk to you!!!

We are having our first giveaway. Check out the forum section at www.lalsolace.org for details!
04/13/2012
LAL Solace Patient Community

We are having our first giveaway. Check out the forum section at www.lalsolace.org for details!

LAL Solace is an online support group to help patients with LAL Deficiency (Lysosomal Acid Lipase Disease) and Wolman Disease.

04/05/2012

Hope everyone has a pleasant Easter weekend!

LAL Community...this is the last day to help us with our survey. PLEASE take two minutes to help our community. You can ...
03/26/2012
LAL Solace Patient Community

LAL Community...this is the last day to help us with our survey. PLEASE take two minutes to help our community. You can find the survey under the forum section at www.lalsolace.org. Thank you!!!

LAL Solace is an online support group to help patients with LAL Deficiency (Lysosomal Acid Lipase Disease) and Wolman Disease.

ATTENTION: Families and patients affected in any way by Wolman's Disease or Cholesterol Ester Storage Disease...please t...
03/19/2012
LAL Solace Patient Community - LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patie

ATTENTION: Families and patients affected in any way by Wolman's Disease or Cholesterol Ester Storage Disease...please take two minutes of your time to fill out our online survey at www.lalsolace.org. You can find the survey under the forum section. Please help us to help families like us!!!

LAL Solace is an online support group to help patients with LAL Deficiency (Lysosomal Acid Lipase Disease) and Wolman Disease.

03/04/2012

New Info on Clinical Trials for LAL Deficiency (both early and late onset)...Check out the Clinical Trials tab on www.lalsolace.org!

This is such a great idea!
02/06/2012
Handprints Across America « Rare Disease Day USA

This is such a great idea!

There are nearly 30 million Americans living with rare diseases. We want to see you and how Rare Disease Day is spreading across the United States. We invite you to print out this flyer with the Rare Disease Day logo and to take a picture of you holding it up anywhere in the US. We will post these p...

01/24/2012
Global Genes

Global Genes

Today is the first day of the 2012 Year of the Dragon! The dragon is a Chinese zodiac sign, considered to be the emperor's. It represents strength, benevolence and good luck. My wish to all families in the GGP community ~ Be Strong, Be in the moment, enjoy each smile, Continue the fight, for luck is not a given, it is earned. There are no more deserving families then you all.

Central Arizona Rare Disease Support
01/24/2012
Central Arizona Rare Disease Support

Central Arizona Rare Disease Support

To offer support, information, and research to patients with rare diagnosed conditions, and those with undiagnosed health issues.

01/01/2012

Here's hoping for great things to happen in the Rare Disease Community in 2012!

12/29/2011

What do you hope to see happen in the LAL community in 2012?

12/23/2011

Hope everyone has a peaceful holiday weekend.

12/05/2011

Our thoughts and prayers go out to sweet Hannah's family. Hannah passed away last night at age 3 from another rare storage disease...Gaucher's Disease.

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Afton, MN
55001

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