Remember The Girls

collectively coeXisting

Society EN ↓ 98 episodes

Explore the untold stories of females impacted by X-linked conditions. Hosted by Emma Bliss and Taylor Kane of Remember The Girls, “collectively coeXisting” brings to light the reality of being a female impacted by an X-linked condition and the general challenges women face within the healthcare system. Hear from X-linked carriers and affected females about their journeys with genetic testing, family planning, physical symptoms, mental health, and everything in between. Also learn from experts about topics such as carrier screening, genetic counseling, advancements in research, and more.

Be sure to visit the podcast's website and support the creator: www.rememberthegirls.org

Author

Remember The Girls

Category

Society

Podcast website

www.rememberthegirls.org

Latest episode

Apr 10, 2025

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Episodes

Episode 48: Fabry Disease with Taylor & Andrea 30.04.2024

*SOLIDARITY EPISODE* This month in partnership with ⁠Fabry Support & Information Group⁠ ! Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls. This month, we are featuring Fabry disease. Fabry Disease is a rare X-linked disorder caused by a mutation in the...

Fabry Disease with with Lisa Berry, LGC 12.04.2024

This month in partnership with ⁠⁠ Fabry Support & Information Group ! This month, we are featuring Fabry disease. Fabry Disease is a rare X-linked disorder caused by a mutation in the gene encoding for the α-galactosidase A (α-Gal A) enzyme, or GLA gene, which typically functions to produce a protein required for the breakdown of lipids in cells. Females tend to have a variable course of Fabry...

Episode 47: Fabry Disease with Sabina 09.04.2024

*SOLIDARITY EPISODE* This month in partnership with Fabry Support & Information Group ! Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls. This month, we are featuring Fabry disease. Fabry Disease is a rare X-linked disorder caused by a mutation in the ge...

Episode 46: Alport Syndrome with Rachel 27.03.2024

*SOLIDARITY EPISODE* This month in partnership with ⁠Alport Syndrome Foundation⁠ ! Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls. Some of these X-linked conditions are part of a larger disease umbrella with other types of inheritance patterns. This month,...

X-Linked Alport Syndrome with Jennie Feiger, PA-C, CAQ-neph 14.03.2024

This month in partnership with ⁠Alport Syndrome Foundation⁠ ! Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls. Some of these X-linked conditions are part of a larger disease umbrella with other types of inheritance patterns. This month, we are featuring Alp...

Episode 45: Autosomal Recessive Alport Syndrome with December West 06.03.2024

*SOLIDARITY EPISODE* This month in partnership with Alport Syndrome Foundation ! Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls. Some of these X-linked conditions are part of a larger disease umbrella with other types of inheritance patterns. This month, w...

Navigating Romantic Relationships as an X-Linked Carrier 29.02.2024

This month as part of our Carrier Connections program, we are discussing navigating romantic relationships as a female impacted by X-linked disease. In this episode, Remember The Girls founder, Taylor Kane, brings on her partner of 5 years to discuss how Taylor being a carrier of ALD has impacted their relationship. Carrier Connections is sponsored by Horizon Therapeutics, Sanofi, and Ultragenyx P...

Episode 44: Lesch-Nyhan Syndrome with Gaby Ponce 31.01.2024

Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls. This month, we are featuring Lesch-Nyhan syndrome (LNS). LNS is an X-linked disorder caused by a mutation in the gene, HPRT1, which plays a critical role in the body’s ability to process purines. With the rec...

Episode 43: Lesch-Nyhan Syndrome with Michelle Lucas 17.01.2024

Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls. This month, we are featuring Lesch-Nyhan syndrome (LNS). LNS is an X-linked disorder caused by a mutation in the gene, HPRT1, which plays a critical role in the body’s ability to process purines. With the rec...

XLI Expert Interview with Dr. William Davies 12.12.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring X-linked ichthyosis (XLI) . XLI is a rare X-linked condition caused by a deficiency in the enzyme steroid sulfatase which, under normal conditions, functions to maintain the integrity o...

Episode 42: Hunter Syndrome with Cristol O'Loughlin 28.11.2023

Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls. This month, we are featuring Hunter syndrome. Hunter syndrome is an X-linked genetic disorder caused by the deficiency of the iduronate 2-sulfatase enzyme, an essential protein required for sugar breakdown. A...

Episode 41: Kennedy's Disease with Joan 24.10.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Kennedy's disease. Kennedy's disease is an X-linked disorder characterized by muscle weakness and wasting that typically manifests in adulthood. It is caused by a mutation in th...

Kennedy's Disease Expert Interview with Dr. Christopher Grunseich 24.10.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Kennedy's disease. Kennedy's disease is an X-linked disorder characterized by muscle weakness and wasting that typically manifests in adulthood. It is caused by a mutation in th...

Episode 40: Kennedy's Disease with Alison 12.10.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Kennedy's disease. Kennedy's disease is an X-linked disorder characterized by muscle weakness and wasting that typically manifests in adulthood. It is caused by a mutation in th...

Episode 39: Barth Syndrome with Kelsey 01.10.2023

SIGN THE PETITION:  https://chng.it/ZCcLLyFSBV Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Barth syndrome. Barth syndrome is an X-linked disorder characterized by symptoms that include the enlargement and weakening of the heart,...

Barth Syndrome Expert Interview with Rebecca McClellan, MGC, CGC 29.09.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. In the month of September, we are featuring Barth syndrome.  Barth syndrome is an X-linked disorder characterized by symptoms that include the enlargement and weakening of the heart, skeletal muscle abnormalities,...

Episode 38: Barth Syndrome with Kristi 20.09.2023

SIGN THE PETITION: https://chng.it/ZCcLLyFSBV Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Barth syndrome. Barth syndrome is an X-linked disorder characterized by symptoms that include the enlargement and weakening of the heart, s...

XLH Expert Interview with Marian Hart, RN, BSN, CCRC 06.09.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. In the month of August, we featured XLH.  X-linked hypophosphatemia (XLH) is a genetic disease caused by mutations in the PHEX gene. These mutations cause bone cells to secrete increased concentrations of a hormone...

Episode 37: XLH with Susan Faitos & Kelly Rushing 30.08.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring X-linked hypophosphatemia (XLH). XLH is a genetic disease caused by mutations in the PHEX gene. These mutations cause bone cells to secrete increased concentrations of a hormone respons...

Industry Interview with Molly Keane, Horizon Therapeutics 31.07.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring chronic granulomatous disease (CGD). CGD is a rare genetic disease that impacts the body’s immune system. When CGD is caused by a mutation in the CYBB gene, it is inherited in an X-link...

Episode 36: CGD with Jessica Ellen Scott 24.07.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring chronic granulomatous disease (CGD). CGD is a rare genetic disease that impacts the body’s immune system. When CGD is caused by a mutation in the CYBB gene, it is inherited in an X-link...

Episode 35: CGD with Felicia Morton 10.07.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring chronic granulomatous disease (CGD). CGD is a rare genetic disease that impacts the body’s immune system. When CGD is caused by a mutation in the CYBB gene, it is inherited in an X-link...

Fragile X Expert Interview with Dr. Rebecca Kronk 29.06.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Fragile X syndrome. Fragile X syndrome is a heritable X-linked disorder caused by an abnormality in the FMR1 gene. This gene makes the protein, FMRP, which plays a critical role in the...

Episode 34: Fragile X Syndrome with Maddy Forrer 16.06.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Fragile X syndrome. Fragile X Syndrome is a heritable X-linked disorder caused by an abnormality in the FMR1 gene. This gene makes the protein, FMRP, which plays a critical role in the...

Episode 33: Fragile X with Evelyn Gee 15.06.2023

Each month, our Carrier Connections program features a different X-linked condition with the goal to increase awareness and education of X-linked conditions and how they impact females. This month, we are featuring Fragile X syndrome. Fragile X Syndrome is a heritable X-linked disorder caused by an abnormality in the FMR1 gene. This gene makes the protein, FMRP, which plays a critical role in the...

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