Organic Acidemia Association Public Page

Organic Acidemia Association Public Page The Organic Acidemia Association is a 501c3 organization supporting families with rare OA disorders

We are a volunteer non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. We support early intervention through expanded newborn screening, solicit contributions and distribute funding that supports research toward improved treatment and eventual cures in the areas of Organic Acid disorders.

09/03/2026

15 years of irritable bowel symptoms before a metabolic diagnosis.

A new case describes an adult with longstanding gastrointestinal symptoms and fatigue who was eventually diagnosed with ACSF3-related combined malonic and methylmalonic aciduria (CMAMMA).

Patient fibroblasts showed reduced lipoylation of key mitochondrial enzymes. Notably, a high-carbohydrate, protein-restricted diet based on conventional MMA recommendations worsened the gastrointestinal symptoms.

An interesting case that broadens the clinical picture of CMAMMA and questions whether dietary recommendations from other methylmalonic acidurias should simply be applied to this condition.

đź”— Paper in the comments.

đź’™ September is Newborn Screening Awareness Month! đź‘ŁFor babies born with an organic acidemia, early detection can make a ...
09/01/2026

đź’™ September is Newborn Screening Awareness Month! đź‘Ł

For babies born with an organic acidemia, early detection can make a lifesaving difference.

Newborn screening helps identify serious metabolic disorders shortly after birth—often before symptoms appear—giving families and medical teams the opportunity to begin treatment as quickly as possible.

Throughout September, OAA will help raise awareness about the importance of newborn screening and its critical role in giving babies the healthiest possible start.

đź‘Ł A few drops of blood can make a lifetime of difference.

Organic Acidemia Association
We care for the rare.

September 2026, our OAA calendar shines a spotlight on girls and women living with Propionic Acidemia.
09/01/2026

September 2026, our OAA calendar shines a spotlight on girls and women living with Propionic Acidemia.

Congratulations Dr. Vockley! 🎉
08/27/2026

Congratulations Dr. Vockley! 🎉

Continuing our series highlighting the dedicated leaders on our Board of Directors helping to shape the future of …

This spotlight features Jerry Vockley, MD, PhD, FACMG, an ACMG Board member since 2021 and Founding Fellow of the College. He serves as Chief of the Division of Genetic and Genomic Medicine and Director of the Center for Rare Disease Therapy at the UPMC Children's Hospital of Pittsburgh and is the Cleveland Family Endowed Professor in Pediatric Research at the Pitt School of Medicine.

Thank you, Dr. Vockley, for your leadership and continued service to ACMG and our members. Learn more: https://tinyurl.com/JV26BS

Integrity Compounding Pharmacy is excited to announce the launch of injectable 50 mg/mL hydroxocobalamin! This new 50 mg...
08/24/2026

Integrity Compounding Pharmacy is excited to announce the launch of injectable 50 mg/mL hydroxocobalamin!

This new 50 mg/mL concentration offers an additional option for individuals requiring high-dose hydroxocobalamin therapy, including those with cobalamin disorders and other metabolic conditions where high-dose therapy is indicated.

Interested in learning more or requesting a formulation? Reach out to our team today!

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OAA is happy to announce that we recently awarded a Conditional Gift of $50,000 to Dr. Charles Venditti at the NIH.
08/21/2026

OAA is happy to announce that we recently awarded a Conditional Gift of $50,000 to Dr. Charles Venditti at the NIH.

“If you're a caregiver for a child with an Inborn Error of Protein Metabolism, I would love to hear from you! My name is...
08/18/2026

“If you're a caregiver for a child with an Inborn Error of Protein Metabolism, I would love to hear from you!

My name is Kara, and I’m a graduate student in the Genetic Counseling Program at the Medical College of Wisconsin. I’m conducting a research study to better understand how everyday factors (such as transportation, finances, where you live, insurance, and other life circumstances) affect access to medical foods and formula for children with inborn errors of metabolism (IEMs).

Your experiences matter. By sharing them, you can help us better understand the barriers families face and contribute to more patient-centered care and improved access for the IEM community in the future.

The study flyer below includes more information about who is eligible to participate. If you're interested, you can complete the brief interest form using the link below or by scanning the QR code on the flyer.

Participation is voluntary, and if you choose to participate, your survey responses will be kept confidential.

Thank you so much for taking the time to read this and for considering participating.

This study has been reviewed and approved by the Medical College of Wisconsin Institutional Review Board (IRB).”

I am happy to answer any questions you may have.

Thank you,
Kara Raymond
Genetic Counseling Student
Medical College of Wisconsin, MSGC Program
[email protected]

https://mcwisc.co1.qualtrics.com/jfe/form/SV_ebLKNstQJrS8EJw

***Open to caregivers of children under 18 years old

Address

9040 Duluth Street
Golden Valley, MN
55427

Telephone

+17635591797

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