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OAA News

Karli, Propionic Acidemia, Age 34

Our Kids  / Karli Propionic Acidemia, Age 34 My name is Karli, and I am now 34 years old. I live in my own apartment in Winona Minnesota. My OAA Story had gone out in the OAA Newsletter in 1998

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Nolan, Propionic Acidemia, Age 18 months

Our Kids  / Nolan, Propionic Acidemia, Age 18 Months Nolan was born in September 2021 after a healthy, low risk, and uneventful pregnancy. Initially all appeared well, although hindsight is 20/20, right? Nolan is my third child and did not

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Allison and Marcel

Our Kids  / Allison and Marcel Propionic Acidemia Allison is 14 years old and Marcel is 18 months old, both were diagnosed with Propionic Acidemia through newborn screening. Allison was hospitalized for a few days right after her diagnosis was

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Rare PA Twins

A wonderful experience in the air Traveling with our PA twins has really not been much of an option for us unless it’s a 3-4 hour drive at most. They are easily car sick and long road trips just don’t

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Grant and Sebastian

Our Kids  / Grant & Sebastian Propionic Acidemia Our story with PA started out the same as many of yours.  Our sons were born looking perfectly healthy, besides being born six weeks early and being twins.  Everyone that saw them

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Kate

Our Kids  / Kate Propionic Acidemia – Newborn Screened! Our family and friends were quite surprised when we told them over the Christmas Holiday 2006 that we were having a baby. We had been married 13 years and we were

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Elizabeth PA

Our Kids  / Elizabeth Propionic Acidemia Our adventure started December 17, 2015. Elizabeth was born on her dad’s birthday. Everything seemed normal, first dirty diaper, hearing test, and heal pricks. When she was two days old, she started losing her

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Recent Post

flyer for webinar on GA1 natural history study on February 18, 2026.
GA-1 Natural History Webinar
Rare Disease Day 2026 – OAA Tshirt Fundraiser
Organic Acidemia Natural History Registry has migrated to a new platform!
NIH awards more than $15 million to fund two rare diseases consortia
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Abram & Asa, MMA Cbl B
two young girls sitting on a merry-go-round
Elizabeth (age 9) and Morgane (age 7), Propionic Acidemia
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Ryan, 5 months old, Propionic Acidemia
first page of the august 2025 OAA newsletter
Summer 2025 OAA Newsletter (Digital Version Available Now!)
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Elijah (19), Tyler (22), MMA Mut 0, Liver/kidney transplant
toddler sitting on a knitted blanket next to some pink sunglasses
Emerald, Glutaric Acidemia, Type 1, Age 2
front page of the OAA Spring 2025 newsletter
Spring 2025 OAA Newsletter (Digital Version Available Now!)
flyer for OAA webinar about introduction to ABLE accounts
Intro to ABLE Accounts for OAA Families
Flyer for 2025 OAA rare disease day t-shirt
Rare Disease Day 2025 – OAA Tshirt Fundraiser
2025 OAA Fundraising Calendar Ready to Purchase!
first page of the OAA Patient Assistance program flyer
NORD’s new Organic Acidemia Patient Assistance Program
Nutricia Changes Production of GlutarAde
Jonathan, MMA Mut 0, Age 14
Eli, Glutaric Acidemia, Type 1, Age 3
Mead Johnson Formula Update – October 2024
Mead Johnson Formula Interruption – July 29, 2024
Jackson, Methlymalonic Acidemia, Cobalamin C, Age 9
Eithan, Propionic Acidemia, Age 2 – Ecuador
Luisa, Methylmalonic Acidemia Mut 0, Age 4 – Brazil
Thank you Sponsors!!
Upcoming Zoom Webinar – Meet our newest physician at the NIH!
Hope you can attend the 2024 FOD/OAA Family Forum
Ask Me Anything with flok!
Rare Disease Day 2024 – OAA Tshirt Fundraiser
3D avatar of woman with multicolored jumpsuit and chunky black boots
Update: My Newest Adventure – Michael Clapcich
Karli, Propionic Acidemia, Age 34
Raechel, MMA, Cobalamin C, age 20
Formula Shortage Survey
Holiday Fundraiser – Texas Roadhouse Gift Cards!
2024 OAA Fundraising Calendar Ready to Purchase!
Demo Derby Sibling Honors Brother and others with Organic Acidemias!
Meadow, 3-MCC
Leo – Isovaleric Acidemia, Age 20 months
Summer 2023 OAA Newsletter (Digital Version Available Now!)
Webinar Discussion on Liver/Kidney Transplant with other OAA Families
Join Us for a Dietician Talk-Exclusively for OAA Families
Update on the Rapid Blood Ammonia Testing Instrument
Katie – Glutaric Acidemia, Type 1
Cameron, Methylmalonic Acidemia, Cbl C, Age 6 years
Nolan, Propionic Acidemia, Age 18 months
Winter 2023 OAA Newsletter (Digital Version Available Now!)
Luca, Davide and Simone
Jose
Gabriel
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