Rare Disease Day

Recent Post

flyer for webinar on GA1 natural history study on February 18, 2026.
GA-1 Natural History Webinar
February 18, 2026
Rare Disease Day 2026 – OAA Tshirt Fundraiser
January 26, 2026
Organic Acidemia Natural History Registry has migrated to a new platform!
October 6, 2025
NIH awards more than $15 million to fund two rare diseases consortia
September 26, 2025
picture of young noy smiling and holding handmade Rare bear
Abram & Asa, MMA Cbl B
September 11, 2025
two young girls sitting on a merry-go-round
Elizabeth (age 9) and Morgane (age 7), Propionic Acidemia
September 10, 2025
blonde haired baby with yellow onsie crawling on a blanket
Ryan, 5 months old, Propionic Acidemia
September 8, 2025
first page of the august 2025 OAA newsletter
Summer 2025 OAA Newsletter (Digital Version Available Now!)
September 4, 2025
photo of orange race car with the number 760 on the side driving on race track
Elijah (19), Tyler (22), MMA Mut 0, Liver/kidney transplant
April 14, 2025
toddler sitting on a knitted blanket next to some pink sunglasses
Emerald, Glutaric Acidemia, Type 1, Age 2
April 14, 2025
front page of the OAA Spring 2025 newsletter
Spring 2025 OAA Newsletter (Digital Version Available Now!)
April 7, 2025
flyer for OAA webinar about introduction to ABLE accounts
Intro to ABLE Accounts for OAA Families
February 12, 2025
Flyer for 2025 OAA rare disease day t-shirt
Rare Disease Day 2025 – OAA Tshirt Fundraiser
January 21, 2025
2025 OAA Fundraising Calendar Ready to Purchase!
November 22, 2024
first page of the OAA Patient Assistance program flyer
NORD’s new Organic Acidemia Patient Assistance Program
November 22, 2024
Nutricia Changes Production of GlutarAde
October 30, 2024
Jonathan, MMA Mut 0, Age 14
October 15, 2024
Eli, Glutaric Acidemia, Type 1, Age 3
October 14, 2024
Mead Johnson Formula Update – October 2024
October 7, 2024
Mead Johnson Formula Interruption – July 29, 2024
July 29, 2024
Jackson, Methlymalonic Acidemia, Cobalamin C, Age 9
July 22, 2024
Eithan, Propionic Acidemia, Age 2 – Ecuador
July 11, 2024
Luisa, Methylmalonic Acidemia Mut 0, Age 4 – Brazil
July 8, 2024
Thank you Sponsors!!
June 14, 2024
Upcoming Zoom Webinar – Meet our newest physician at the NIH!
April 8, 2024
Hope you can attend the 2024 FOD/OAA Family Forum
April 5, 2024
Ask Me Anything with flok!
March 19, 2024
Rare Disease Day 2024 – OAA Tshirt Fundraiser
January 15, 2024
3D avatar of woman with multicolored jumpsuit and chunky black boots
Update: My Newest Adventure – Michael Clapcich
December 29, 2023
Karli, Propionic Acidemia, Age 34
December 28, 2023
Raechel, MMA, Cobalamin C, age 20
December 28, 2023
Formula Shortage Survey
December 1, 2023
Holiday Fundraiser – Texas Roadhouse Gift Cards!
November 8, 2023
2024 OAA Fundraising Calendar Ready to Purchase!
November 2, 2023
Demo Derby Sibling Honors Brother and others with Organic Acidemias!
August 22, 2023
Meadow, 3-MCC
July 27, 2023
Leo – Isovaleric Acidemia, Age 20 months
July 26, 2023
Summer 2023 OAA Newsletter (Digital Version Available Now!)
July 25, 2023
Webinar Discussion on Liver/Kidney Transplant with other OAA Families
June 11, 2023
Join Us for a Dietician Talk-Exclusively for OAA Families
June 11, 2023
Update on the Rapid Blood Ammonia Testing Instrument
June 5, 2023
Katie – Glutaric Acidemia, Type 1
May 4, 2023
Cameron, Methylmalonic Acidemia, Cbl C, Age 6 years
April 24, 2023
Nolan, Propionic Acidemia, Age 18 months
April 13, 2023
Winter 2023 OAA Newsletter (Digital Version Available Now!)
April 5, 2023
Luca, Davide and Simone
January 13, 1999
Jose
June 15, 2003
Gabriel
October 15, 2004
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