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collectively coeXisting

by Remember The Girls

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.

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Episodes

  1. Ep. 69: Discussing Family Health History with Dena DNA

    Dena is a board-certified genetic counselor with 9 years of clinical experience, a content creator, science communicator and healthcare thought leader. Formerly the Endowed Counselor of Hereditary Gastrointestinal Cancer Prevention with the UCSF Cancer Genetics and Prevention program, she left...

  2. Ep. 68: Choroideremia with Michelle Holbrook

    *This month in partnership with ⁠Choroideremia Research Foundation⁠* Our Carrier Connections program features a different X-linked condition each month to increase awareness of X-linked conditions and how they impact the lives of women and girls. This month, we are featuring choroideremia (CHM)....

  3. Ep. 67: X-Linked Retinal Diseases with Dr. Sena Gocuk

    *This month in partnership with Choroideremia Research 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. This month, we are featuring...

  4. Ep. 66: Disclosing an X-linked diagnosis to extended family with Savannah & Alexis

    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. From time to time we also feature topics important to the X-linked community. This month, we are...

  5. Ep. 65: Association Xtraordinaire Remembers the Girls with CTD

    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 creatine transported deficiency, or CTD. We are partnering with ⁠Association...

  6. Ep 64: A diagnosis of CTD after 17 years with Bonnie & Andrea

    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 creatine transported deficiency, or CTD. We are partnering with Association...

  7. REPOST: OTC Expert Interview with Dr. Andrea Gropman

    **REPOST** 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 ornithine transcarbamylase (OTC) deficiency is an X-linked…

    more

  8. Ep. 63: A Life with OTC with Kristy McCracken

    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 ornithine transcarbamylase (OTC) deficiency is an X-linked genetic disorder...

  9. Ep. 62: Carriers of Duchenne with Dr. Mena Scavina

    *This month in partnership with ⁠⁠⁠⁠PPMD⁠⁠* 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 Duchenne muscular dystrophy…

    more

  10. Ep. 61: Being a Fourth Generation Carrier with Alexandra Wells

    *This month in partnership with ⁠⁠⁠PPMD⁠* 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 Duchenne muscular dystrophy (DMD)....

  11. Ep. 60: Trina Stelly on Life as a Female with Dystrophinopathy

    *This month in partnership with ⁠⁠PPMD* 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 Duchenne muscular dystrophy (DMD)....

  12. Ep. 59: Females with ALD with Dr. Eichler

    *This month in partnership with ⁠⁠ALD Connect⁠⁠* 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 adrenoleukodystrophy (ALD)....

  13. Ep. 58: Raising Awareness of ALD in English & Arabic with Riham

    *This month in partnership with ⁠ALD Connect⁠* 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 adrenoleukodystrophy (ALD).…

    more

  14. Ep. 57 Fighting ALD Symptoms with Jana

    *This month in partnership with ALD Connect* 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 adrenoleukodystrophy (ALD). ALD...

  15. Ep. 56: Aaron Gardner on Passing ALD Down to His Daughter

    Our Carrier Connections program features a different X-linked condition or community topic 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 highlighting the topic of discussing X-linked inheritance and…

    more

  16. Ep. 55: Isabella & Beth – Discussing X-Linked Carrier Status with Your Daughter (Their Lived Experience)

    Our Carrier Connections program features a different X-linked condition or community topic 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 highlighting the topic of discussing X-linked inheritance and…

    more

  17. Ep. 54: Elsa & Ann – Discussing X-Linked Carrier Status with Your Daughter (Their Lived Experience)

    Our Carrier Connections program features a different X-linked condition or community topic 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 highlighting the topic of discussing X-linked inheritance and…

    more

  18. Discussing X-Linked Carrier Status With Your Daughter with Ali Conn, MS, CGC

    Our Carrier Connections program features a different X-linked condition or community topic 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 highlighting the topic of discussing X-linked inheritance and…

    more

  19. XLH with Elizabeth Olear, Yale School of Medicine

    *This month in partnership with ⁠XLH Network⁠* 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 X-linked hypophosphatemia...

  20. Episode 53: X-linked Hypophosphatemia with Shannon Sharp

    *This month in partnership with XLH Network* 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 X-linked hypophosphatemia…

    more

  21. Industry Interview with Lauren Walrath, Kyowa Kirin

    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…

    more

  22. Episode 52: X-linked Hypophosphatemia with Sunindiya

    *This month in partnership with XLH Network* 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 X-linked hypophosphatemia…

    more

  23. Episode 51: Myotubular Myopathy with Meghan Musante

    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 myotubular myopathy (MTM). MTM is an X-linked genetic disorder characterized...

  24. Episode 50: Myotubular Myopathy with Kim Engst

    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 myotubular myopathy (MTM). MTM is an X-linked genetic disorder characterized...

  25. Episode 49: Myotubular Myopathy with Jessica Stanley

    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 myotubular myopathy (MTM). MTM is an X-linked genetic disorder characterized...

  26. Episode 48: Fabry Disease with Taylor & Andrea

    *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…

    more

  27. Fabry Disease with with Lisa Berry, LGC

    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…

    more

  28. Episode 47: Fabry Disease with Sabina

    *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...

  29. Episode 46: Alport Syndrome with Rachel

    *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...

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

    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…

    more

  31. Episode 45: Autosomal Recessive Alport Syndrome with December West

    *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...

  32. Navigating Romantic Relationships as an X-Linked Carrier

    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...

  33. Episode 44: Lesch-Nyhan Syndrome with Gaby Ponce

    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...

  34. Episode 43: Lesch-Nyhan Syndrome with Michelle Lucas

    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...

  35. XLI Expert Interview with Dr. William Davies

    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...

  36. Episode 42: Hunter Syndrome with Cristol O'Loughlin

    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…

    more

  37. Episode 41: Kennedy's Disease with Joan

    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…

    more

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

    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…

    more

  39. Episode 40: Kennedy's Disease with Alison

    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…

    more

  40. Episode 39: Barth Syndrome with Kelsey

    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...

  41. Barth Syndrome Expert Interview with Rebecca McClellan, MGC, CGC

    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…

    more

  42. Episode 38: Barth Syndrome with Kristi

    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...

  43. XLH Expert Interview with Marian Hart, RN, BSN, CCRC

    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…

    more

  44. Episode 37: XLH with Susan Faitos & Kelly Rushing

    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…

    more

  45. Industry Interview with Molly Keane, Horizon Therapeutics

    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…

    more

  46. Episode 36: CGD with Jessica Ellen Scott

    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…

    more

  47. Episode 35: CGD with Felicia Morton

    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…

    more

  48. Fragile X Expert Interview with Dr. Rebecca Kronk

    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…

    more

  49. Episode 34: Fragile X Syndrome with Maddy Forrer

    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…

    more

  50. Episode 33: Fragile X with Evelyn Gee

    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…

    more
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ABOUT THIS SHOW

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.

HOSTED BY

Remember The Girls

Frequently Asked Questions

How many episodes does collectively coeXisting have?

collectively coeXisting currently has 98 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.

What is collectively coeXisting about?

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...

How often does collectively coeXisting release new episodes?

collectively coeXisting has 98 episodes. Check the episode list to see recent publication dates and frequency.

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You can listen to collectively coeXisting on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.

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collectively coeXisting is created and hosted by Remember The Girls.
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