Long Chain Hydrocxy Coenzyme A Dehydrogenase Deficiency (LCHAD)

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This week Rare Connection goes back to it's roots with a condition covered by the Medical Nutrition Equity Act if it were to pass. The MNEA would mandate that health insurance cover medically prescribed food, formula and vitamins for those who need them. At the beginning of last season in February Nutrition Equity became Rare Conne6892ction to cover more conditions and allow me to go outside the country. House bill 6892 was reintroduced into congress by representative McGovern.
Long Chain Hydroxy Coenzyme A Dehydrogenase Deficiency (LCHAD) is an Inborn Error in Metabolism. Join me as I talk to Alexandra about how she was diagnosed, her podcast "Positively Walking with Mito<" Advocacy, Advice and hopes for the future as well as the Medical Nutrition Equity Act and how it would help those with LCHAD.
We are currently seeking a Senate Republican to champion the senate side. If you are in the US you can help us to get this bill passed for countless individuals. 12 episodes of Nutrition Equity were filmed before it became Rare Connection. We also now have a website. rareconnection.org If you are interested you can join our email list, read about our board members that currently have bios up, and more. Some of the episodes and shorts are also on their.
I am in the process of turning Rare Connection into a nonprofit, but I currently don't have all of the paperwork filed with the state and feds to do so. Your support is greatly appreciated, please click on the support the show link to support us. The podcast is monetized, I am also a caregiver and a rare disease advocate. I have an inborn error in Metabolism, a genetic condition called Homocystinuria which is related to PKU by diet, and (we follow a low protein diet because of a problem with a different essential amino acid) It looks more like Marfan's Syndrome and is commonly mistaken for it though. You can also text me through the link in the show notes. If you have a business I could also use sponsors. Thank you for your continued support.

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