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9040 Duluth Street Golden Valley, MN 55427 Welcome to the Organic Acidemia Association
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.
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Propionic Acidemia Study Opens at the NIH |
Hi - We are happy to announce that the NIH has approved their study on Propionic Acidemia.
Natural History, Physiology, Microbiome and Biochemistry Studies of propionic Acidemia
Charles Venditti MD PhD
Oleg Shchelochkov MD
National Institutes of Health
Why are we doing this study?
Propionic acidemia (PA) is one of the most common disorders of organic acid metabolism. Newborn screening for propionic acidemia allows doctors start treatment at an early age. However, despite early and intense medical treatment, many patients experience health problems. Patients can have frequent hospitalizations for metabolic crises and develop chronic medical issues such as brain, eye, heart, abdomen, and kidney problems.
To help better understand the health problems patients with propionic acidemia have, we are starting a new study: “Natural History, Physiology, Microbiome and Biochemistry Studies of Propionic Acidemia”. This study will evaluate patients with propionic acidemia to learn more about the genetic and biochemical causes and the medical complications associated with it. We also plan to study how bacteria living in our gut (microbiome) can affect the course of propionic acidemia.
How can patients participate in this study and what will happen during the visit?
Eligible patients will be admitted to the NIH Clinical Center for 3-5 days. Most travel expenses are covered for patients and their care providers. A typical visit will involve a medical interview, physical examination, genetic counseling and consultation with experts in different fields, such as the nervous system, nutrition, rehabilitation medicine and other areas of medicine. Patients will be asked to provide blood, urine and stool samples to help measure function of organs affected by propionic acidemia. We use imaging studies such as X-ray and ultrasound to look for changes in organs inside the body. We may offer additional tests to some patients.
How can I find out more about this study?
You can find our more about this study by visit our the Propionic Acidemia Clinical Trials webpage
https://clinicaltrials.gov/ct2/show/record/NCT02890342?term=propionic&rank=4
Contact information
If you are interested in learning more about the study please contact us:
pastudy@mail.nih.gov
or
NIH Clinical Center Patient Recruitment and Public Liaison Office
1-800-411-1222
As you know OAA has supported Dr. Venditti and his study on MMA for years and I'm so pleased that he has been able to expand the study for Propionic Acidemia!
Natural History, Physiology, Microbiome and Biochemistry Studies of propionic Acidemia
Charles Venditti MD PhD
Oleg Shchelochkov MD
National Institutes of Health
Why are we doing this study?
Propionic acidemia (PA) is one of the most common disorders of organic acid metabolism. Newborn screening for propionic acidemia allows doctors start treatment at an early age. However, despite early and intense medical treatment, many patients experience health problems. Patients can have frequent hospitalizations for metabolic crises and develop chronic medical issues such as brain, eye, heart, abdomen, and kidney problems.
To help better understand the health problems patients with propionic acidemia have, we are starting a new study: “Natural History, Physiology, Microbiome and Biochemistry Studies of Propionic Acidemia”. This study will evaluate patients with propionic acidemia to learn more about the genetic and biochemical causes and the medical complications associated with it. We also plan to study how bacteria living in our gut (microbiome) can affect the course of propionic acidemia.
How can patients participate in this study and what will happen during the visit?
Eligible patients will be admitted to the NIH Clinical Center for 3-5 days. Most travel expenses are covered for patients and their care providers. A typical visit will involve a medical interview, physical examination, genetic counseling and consultation with experts in different fields, such as the nervous system, nutrition, rehabilitation medicine and other areas of medicine. Patients will be asked to provide blood, urine and stool samples to help measure function of organs affected by propionic acidemia. We use imaging studies such as X-ray and ultrasound to look for changes in organs inside the body. We may offer additional tests to some patients.
How can I find out more about this study?
You can find our more about this study by visit our the Propionic Acidemia Clinical Trials webpage
https://clinicaltrials.gov/ct2/show/record/NCT02890342?term=propionic&rank=4
Contact information
If you are interested in learning more about the study please contact us:
pastudy@mail.nih.gov
or
NIH Clinical Center Patient Recruitment and Public Liaison Office
1-800-411-1222
As you know OAA has supported Dr. Venditti and his study on MMA for years and I'm so pleased that he has been able to expand the study for Propionic Acidemia!
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Moderna will share information about potential new treaments for MMA and PA. Be sure to register at this link: https://us02web.zoom.us/.../reg.../WN_elLs2TA1S6eXCFt-F7lpwg
Hemoshear Therapeutics will share information about potential new treatments for MMA and PA. Be sure to register at this link:
https://us02web.zoom.us/webinar/register/WN_23hrLYL0R_6o8DlfGaNldA
https://us02web.zoom.us/webinar/register/WN_23hrLYL0R_6o8DlfGaNldA
2021 OAA Calendar
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Grateful For Life
https://gflclothing.com/
The Alexa Collection is a colorful array of shirts that embody the light love and happy feelings that we felt and continue to feel because of the life we were so privileged to have in our lives. Kids with special needs see all the colors and all the beauty in everyday and make you see it too.
https://gflclothing.com/
The Alexa Collection is a colorful array of shirts that embody the light love and happy feelings that we felt and continue to feel because of the life we were so privileged to have in our lives. Kids with special needs see all the colors and all the beauty in everyday and make you see it too.
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