Amyloidosis Support Group, Inc.

Rating: 4.97 stars   37 reviews

Issues: Health

Location: 232 Orchard Dr Wood Dale IL 60191 USA

Mission: Face to face support and a helpful voice to guide people with this rare disease, with education and awareness of resources and treatment centers.
Target demographics: support, educate and empower patients and care givers of amyloidosis
Programs: Face to Face Support Groups, On LIne Support Groups, 24 Hour Hor/Help Line Toll Free
2014 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

this is a well run, total volunteer agency, that provides face to face support to patients, caregivers, family and friends who deal with this insidious disease (25 cities/66 meetings)......also with one call to the 24 hr hot line or with a click of a mouse on their web site map the patient can be directed to hospitals and drs who are skilled in treating amyloidosis. As with any illness early diagnosis and treatment is critical........volunteer turnover is near zero which shows the dedication of its none paid helpers

 
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Rating: 5 stars  

3 people found this review helpful

At the end of a support group meeting, patients as well as caregivers come up to me and thank me for this support group. Prior to this group, misinformation regarding the survivor rates and treatment of amyloidosis was astounding. This group has distributed the most up to date research from the best amyloidosis centers. The knowledge and education that this group provides is invaluable to an amyloidosis patient/caregiver making their healthcare decision. Without this group's input, this disease would still be considered fatal instead of treatable.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Okay

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2015

 
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Rating: 5 stars  

1 person found this review helpful

My husband passed away of amyloidosis in 2004. At that time, not much was known about amyloidosis. I know it is not unusual today to hear the same about amyloidosis, but with Amyloidosis Support Groups networking with hospitals in the field of amyloidosis, having support groups in hospitals, holding conferences, having an on line group for patients and caregivers, booths at medical conferences, those with amyloidosis are no longer alone. I volunteer with the Ohio & Michigan Amyloidosis Support Groups and seeing the patients, families and caregivers interacting together about their symptoms & treatments is heart warming. Otherwise, they would have no one who has walked their walk or would know no one who had this rare disease.

If I had to make changes to this organization, I would...

N/A

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

Muriel asked me to be her Pacific Northwest Amyloidosis Support Group Co-Facilitator back in 2006. We started with one meeting a year in Portland, grew to two, and now a meeting in Seattle for a total of three yearly meetings. In my opinion, the meetings are professionally run and filled with good medical information. We always have a guest doctor who is an expert in Amyloidosis along with local doctors and other medical staff attending. The LLS joins us to provide medical and financial information as well as lunch for patients. Every meeting we have new people attending as well as regulars who provide helpful tips. I believe we have saved lives by providing the latest medical information available. I contracted AL Amyloidosis in 2002 and remain in healthy remission. Kay

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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