In this bonus episode of HC&U, we present HCU Network America's live panel discussion called "Navigating the Maze" for World Homocystinuria Awareness Day.

We discuss the complex journey of diagnosis and treatment with Melanie, Shaina, and Julie.

We wrap up with Lindsey’s Low-Pro Bitessss. We sound a call to arms for our community! We hope you enjoy!

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Everylife Foundation for Rare Diseases

Rare Disease Legislative Advocates (RDLA)

What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know!

#homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

In the twenty sixth episode of HC&U, we interview Sam Stallings, HCU patient and advocate.

We discuss Sam's experience living with multiple rare diseases and her advocacy for the HCU community.

We wrap up with Lindsey’s Low-Pro Bitessss. We discuss homemade pop tarts and rate it on our random fruit or veggie scale! We hope you enjoy!

Please share the podcast and give us a 5 star rating and review!

Check out HCU Network America!

HC&U on Facebook

Find Our Low Protein Ideas on Instagram!

HC&U on Twitter

Email the podcast!

HCU Network America on Twitter

Everylife Foundation for Rare Diseases

Rare Disease Legislative Advocates (RDLA)

What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know!

#homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

In the twenty fifth episode of HC&U, we interview Jamela Gutierrez, HCU patient and advocate.

We discuss Jamela's journey with HCU and patient advocacy.

We wrap up with Lindsey’s Low-Pro Bites. We discuss veggie pot pie and rate it on our random fruit or veggie scale! We hope you enjoy!

Please share the podcast and give us a 5 star rating and review!

Check out HCU Network America!

HC&U on Facebook

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HC&U on Twitter

Email the podcast!

HCU Network America on Twitter

Patients and Providers for MNEA

https://flok.org

Register for "Ask me anything with Flok" on Monday, 4/22 @ 7 PM ET here!

Newborn Screening Petition

Everylife Foundation for Rare Diseases

What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know!

#homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

In the twenty fourth episode of HC&U, we interview Liz Carter, communications manager of HCU Network America, caregiver advocate, and mother to Elliot who has classical homocystinuria.

We discuss metabolic newborn screening, patient advocacy, and Rare Disease Week.

We wrap up with Lindsey’s Low-Pro Bites. We discuss “healthy tomato basil soup” and rate it on our random fruit or veggie scale! We hope you enjoy!

Please share the podcast and give us a 5 star rating and review!

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HCU Network America on Twitter

Elliot's Story

Newborn Screening Petition

Everylife Foundation for Rare Diseases

Rare Disease Legislative Advocates (RDLA)

Expecting Health

VMP Genetics- Sign up to become a patient/teacher

What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know!

#homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

In this episode, we speak with Brittany Parke, mom of Grayson, who lives with Homocystinuria, Cobalamin G. We discuss why advocacy and research for Hydroxocobalamin is so important for the cobalamin community.

We also share our low protein recipe of the month in Lindsey's Low Pro Bitessss. It is a veggie stew that is great for the winter months (or anytime really)!

Please share the podcast and give us a 5 star rating and review!

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Check out HCU Network America!

In the twenty second episode of HC&U, we continue our interview with Danae!

In this episode, we interview (again) Danae Bartke , an HCU patient and the executive director of HCU Network America. In the second part of our 2 part interview, we discuss the Rare-X data sharing platform. We also announce a new podcast series in collaboration with HCU Network America that debuts in 2024!

We miss Lindsey’s Low-Pro Bites this episode, but it will be back! We hope you enjoy!

**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!

Please share the podcast and give us a 5 star rating and review!

HC&U on Facebook

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HC&U Blog

Email us at hcupodcast@gmail.com!

HCU Network America on Twitter

Check out HCU Network America!

In the twenty first episode of HC&U, we focus on getting our feet back under us as we return from a long hiatus!

In this episode, we interview (again) Danae Bartke , an HCU patient and the executive director of HCU Network America. In the first part of our 2 part interview, we discuss the upcoming ELPF-DD meeting concerning the HCU community.

We miss Lindsey’s Low-Pro Bites this episode, but it will be back! We hope you enjoy!

**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!

Please share the podcast and give us a 5 star rating and review!

HC&U on Facebook

Find Our Low Protein Ideas on Instagram!

HC&U on Twitter

HC&U Blog

Email us at hcupodcast@gmail.com!

HCU Network America on Twitter

Check out HCU Network America!

In the twentieth episode of HC&U, we have our regular “Tell Me Something Good” segment where we share several bits of good news regarding the podcast!

In this episode, we interview Ashley Longthorn, an HCU patient in the UK. We discuss dealing with HCU and the importance of staying on diet.

We wrap up with Lindsey’s Low-Pro Bites. We discuss million dollar spaghetti and rate it on our random fruit or veggie scale! We hope you enjoy!

**FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!

Please share the podcast and give us a 5 star rating and review!

HC&U on Facebook

Find Our Low Protein Ideas on Instagram!

HC&U on Twitter

HC&U Blog

Email us at hcupodcast@gmail.com!

HCU Network America on Twitter

Check out HCU Network America!