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"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

ready to try something natural.

deb66
  • By deb66 · Posted March 30, 2014
  • Discussion in News and research · 0 replies
  • Has anyone seen anywhere, that there is new information about natural cures? Anyone being successful? I am in my 5 round of shingles in less than a year. Just went back off pred. Less than a week and ...

I haven't realised...

Blueruby
  • By Blueruby · New reply March 26, 2014
  • Journal · 14 replies
  • It's a while since I posted some of my journal here. I had been in and out of the hospital for. Complications, chest infection ,low white cells aside from being very weak, lots of cough, fatigue and many ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · New reply March 19, 2014
  • Journal · 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD 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 ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • Journal · 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • Journal · 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

The Inspire Q&A: Inspire talks with Kathy Nieder, MD

John2
  • By John2 · New reply February 23, 2014
  • Journal · 36 replies
  • The Inspire Q&A: Inspire talks with Kathy Nieder, MD By John Novack, Communications Director, Inspire Dear members, We at Inspire are pleased to bring you the latest in a series of interviews with people ...

Introducing Photos for Inspire

Walter
  • By Walter · New reply February 13, 2014
  • Journal · 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...

New infographic: Inspire Rare Disease Health Communities at a Glance

John2
  • By John2 · Posted January 9, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 1/9//13 Dear members, I am writing to share with you a new infographic that Inspire published yesterday: Inspire Rare Disease Health Communities at ...

Thank You, From Inspire

Walter
  • By Walter · New reply December 3, 2013
  • Journal · 108 replies
  • Hello everyone, As Thanksgiving approaches, all of us at Inspire would like to take a moment to thank you for being part of our community. While we wish no one had to deal with the serious health issues ...

Five million

Brian
  • By Brian · New reply August 5, 2013
  • Journal · 261 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

Brian
  • By Brian · New reply July 22, 2013
  • Journal · 116 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 ...

Was it really supposed to be this way?

kaydaylo
  • By kaydaylo · Posted July 16, 2013
  • Journal · 0 replies
  • So..... my baby sister is almost 22 years old. She was born with chondrodysplasia punctata. Through out the years I have watched her grow up, she is eight years younger than me. When I was little I used ...

Vivid nightmares.

kaydaylo
  • By kaydaylo · Posted July 16, 2013
  • Discussion in Symptoms and treatment · 0 replies
  • Hello everyone! My 2 1/2 year old baby Dayzee has MMA Mut o. She has been having nightmares for the last couple of weeks. First she would just wake up crying, but lately they seem to be getting worse ...

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

John2
  • 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

John2
  • 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!

Walter
  • 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)

laurad1584
  • 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 ...

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

John2
  • 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

twinmomplus3
  • 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 ...

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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.