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Nutrition Equity Episode 10: Danae Bartke Exeutive Director HCU Network America

EPISODE · Oct 13, 2023 · 40 MIN

Nutrition Equity Episode 10: Danae Bartke Exeutive Director HCU Network America

from Rare Connection · host Joanna

Send us Fan MailThis month is Homocystinuria (HCU) Awareness Month.  Today I am joined by Danae Bartke the Executive Director of HCU Network America.  Two of the three types of Homocystinuria would  be covered if the Medical Nutrition Equity Act were to pass.  Currently we are trying to get this crucial bill reintroduced into congress again.  In this episode we will discuss the three types of Homocystinuria and the differences between them as well as the upcoming Externally Led  Patient focused Drug Development Meeting later this month with the FDA which could potentially bring new treatment For Classical Homocystinuria.  We will also talk about resources that may be of help.  You can find out more about the bill by going to https://nutritionequity.org/Chapter Markers00:00 Intro02:56 Garrett and Danae's Journey with Homocystinuria and how it has affected her and her family06:03 Danae's role as Executive Director of HCU Network America08:22 3 Types of Homocystinuria12:16 Severe MTHFR is not tested for on the Newborn Screening13:53 How the Medical Nutrition Equity Act helps those with Classical HCU and Cobalamin disorders16:49 Challenges of getting Medical Foods, Medical Formula and Vitamins18:50 Externally Led Patient Focused Drug Development Meeting25:42 How you can help those with Homocystinuria28:02 patient stories31:01 How you can get involved and find out more32:32 hopes for the future36:11 ConclusionSupport the show

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Nutrition Equity Episode 10: Danae Bartke Exeutive Director HCU Network America

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