Organic Acidemia Association Support Community

The Organic Acidemia Association Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

Five million

By Brian · New reply May 18, 2013
Journal · 205 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

A new Inspire report in collaboration with Stanford Medical School

By Brian · New reply May 5, 2013
Journal · 84 replies
As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...

The Inspire Q&A: Inspire talks with Deanna Attai, MD

By John2 · New reply April 16, 2013
Journal · 16 replies
Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. The people in this ...

The Inspire Q&A: Inspire talks with Lindsey Miller

By John2 · New reply February 6, 2013
Journal · 13 replies
We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. The people featured in our Q&A series ...

We're hiring!

By Walter · Posted January 22, 2013
Journal · 0 replies
Hello everyone, We have a position open with our engineering team at Inspire, and I'd like to share the job description with you in the event you know just the person we're looking for. We found our most ...

beta ketothiolase deficiency (BKD)

By laurad1584 · Posted November 7, 2012
Discussion in Raising a child with an organic acid disorder · 0 replies
hi my 5month old son since birth has had very erratic jerky movements and is hurrendously stiff 24/7.. he has been seeing a paed dr every 4 weeks and they have just found out that he has bkd.. there is ...

Tube Site raw Inside

By julet_22 · New reply November 5, 2012
Journal · 4 replies
I need advice here, I've had the same tube site for lets say 22 years, and just now whenever I have to change the tube the pain nearly kills me. Its completely raw and bloody on the inside, and once the ...

The Inspire Q&A: Inspire talks with Howard Luks, MD

By John2 · New reply April 15, 2012
Journal · 59 replies
Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...

please help

By twinmomplus3 · Posted February 22, 2012
Discussion in Symptoms and treatment · 0 replies
what were your child's symptoms that led to any diagnosis? My son is sick and has low muscle tone. Organic acids came back abnormal and so did bloodwork. What can we expect? I am going crazy for answers ...

The Inspire Q&A--Inspire talks with Susan Grant

By John2 · New reply February 15, 2012
Journal · 31 replies
Dear readers, We at Inspire are pleased to bring you the latest in a series of interviews with people making contributions to helping patients and caregivers worldwide. We are posting these interviews ...

Inspire is hiring!

By Walter · New reply January 20, 2012
Journal · 15 replies
Inspire is hiring, and we're wondering if you know someone who would be the perfect addition to our team. Hello everyone, I'm Walter, one of Inspire's founders and the head of our technical team. I'm ...

The Inspire Q&A--Inspire talks with Michele Baldwin

By John2 · Posted January 3, 2012
Journal · 0 replies
Dear readers, We at Inspire are pleased to bring you the latest in a series of interviews with people making contributions to patients and caregivers worldwide. We are posting these interviews in a Q&A ...

Following: A new Inspire feature

By Walter · New reply December 5, 2011
Journal · 111 replies
Hello everyone, I'm writing to let you know about a new Inspire feature that we launched last night, designed to help you keep track of conversations you're interested in. We call it "following" and here's ...

Patient-driven research

By Brian · Posted October 13, 2011
Journal · 0 replies
I'd like to share with you a new Inspire report, The SCAD Ladies Stand Up: Stories of Patient Empowerment, which chronicles patient-initiated research in our community. This amazing patient-driven effort ...

Malonic Aciduria (MA)

By kaseleigh · Posted September 26, 2011
Journal · 0 replies
I am wondering if there are any other patients out there with this diagnosis? My daughter was recently diagnosed after she was picked up on the newborn screening. She is only 1 month old at this point ...

The Inspire Q&A: Inspire talks with Mithra Behnam Mojtahedi

By John2 · New reply July 30, 2011
Journal · 15 replies
Dear readers, We at Inspire are pleased to bring you the latest in a series of interviews with people we feel are making contributions to helping patients worldwide. We are posting these interviews in ...

The Inspire Q&A: Inspire talks with “e-Patient Dave” deBronkart

By John2 · New reply July 26, 2011
Journal · 35 replies
Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...

The Inspire Q&A: Inspire talks with Kevin Pho, MD

By John2 · New reply July 19, 2011
Journal · 58 replies
Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...

New feature -- Browse posts you've recommended

By Walter · New reply June 26, 2011
Journal · 38 replies
Hello everyone, We added a new feature today that we hope you find helpful. You can now browse the complete list of posts that you have recommended, here: Browse posts you've recommended What's a recommendation ...

Any one out there???? PLEASE HELP

By johnsmom2004 · New reply May 28, 2011
Discussion in Raising a child with an organic acid disorder · 1 reply
is there not anyone out there who knows a child or an adult with Beta Ketothiolase Deficiency(also known as KUD) the only people on the internet i can find have not posted in the last 2-3 years and i ...

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About this community

The Organic Acidemia Association Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Organic Acidemia Association, an Inspire trusted partner.