ONLINE | June 2023

Both of these OAA advisors helped to develop the Nutritional Guidelines for Propionic Acidemia and will be working on the guidelines for MMA very soon!

ONLINE | APRIL 20, 2023

April is Donate Life Month, and Regan Reeder facilitates a discussion with liver/kidney transplant families.

RARE DISEASE DAY: FEBRUARY 22, 2023

In this first video, hear from Honey Stecken, who recently shared with us her story of caring for her daughter, Maren, with PA in Moderna's #VoiceOfThePatient series for #rarediseaseday.

RARE DISEASE DAY: FEBRUARY 22, 2023

In the second video of the #VoiceOfThePatient series, Honey Stecken, mom to Maren, shares her experience of raising a child with Propionic Acidemia (PA) during COVID-19, and how some parents actually felt safer during the pandemic because others were required to take the same precautions that they had to be mindful of every day.

RARE DISEASE DAY: FEBRUARY 22, 2023

In the third video of the #VoiceOfThePatient series, Kathy Stagni, Executive Director of Organic Acidemia Association and mom to Melissa, who lives with Propionic Acidemia, shares her passion to connecting families with rare metabolic disorders.

RARE DISEASE DAY: FEBRUARY 22, 2023

In the fourth video of the #VoiceOfThePatient series, Kathy Stagni shares how newborn screening is giving the world a better picture of the true impact of rare metabolic disorders like methylmalonic acidemia (MMA) and propionic acidemia, allowing a larger group of families to come together.