22 min

Rare Diseases with Kristine Hoestermann of the Because We Re Strong Podcast Causepods

    • Non-Profit

What would it feel like not knowing?
For most of our life, we always get to know what's wrong, how to fix it, and what comes next. As we hear today, that is not always the case when it comes to diseases and for many people, they live life, not knowing what's wrong or how long they have.
Our guest Kristine opens up about her story of feeling alone and a passion that came from it to find things in common within the rare disease community to help people feel they are not alone.
Key Topics:
· What is the purpose of the Because We Are Strong podcast (0:58)
· The backstory leading up to why a podcast like this was needed (1:46)
· Dealing with life, without a diagnosis (3:00)
· How common is it to live with a disease and not know what's wrong (4:00)
· What made podcasting the best medium for this cause (6:30)
· What is missing in the podcast landscape that would have helped get started (7:30)
· What has been the impact of the podcast (9:37)
· If you just got started today, what did you need to know (11:00)
· Dealing with guess pitching (13:00)
· How did the RARE apparel clothing company fit into the strategy (15:49)
Website link: http://bwspod.com/ (Bwspod.com)
Podcast Links:
· https://podcasts.apple.com/us/podcast/because-we-are-strong/id1530703166 (Apple)
· https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5idXp6c3Byb3V0LmNvbS8xMzAyNDg3LnJzcw== (Google)
· https://open.spotify.com/show/1VBL2fID9oYf9fwBx2mi3t (Spotify)
Charity: Find Your RARE (https://findyourrare.com/ (website))
Donation: https://findyourrare.com/pages/ourstory (Link)
Social Links
· https://www.linkedin.com/in/kristine-hoestermann-82139a1a2/ (LinkedIn)
· https://twitter.com/findyourrare (Twitter)
· https://facebook.com/findyourrare (Facebook)
· https://redirect.viglink.com/?format=goandjsonp=vglnk_163607898229012andkey=9c32f909009f012c8e816fdd1f242ef2andlibId=kvlr5370010397pu000DLh57xttkwjutiandloc=https%3A%2F%2Ffindyourrare.com%2Fandv=1andopt=trueandout=https%3A%2F%2Finstagram.com%2Ffindyourrareandtitle=RARE.andtxt=%0A%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%0A%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20Instagram%0A%20%20%20%20%20%20%20%20%20%20%20%20%20%20 (Instagram)
Thanks for Listening!
Be sure to subscribe onhttps://itunes.apple.com/us/podcast/causecasts/id1398644299?mt=2 ( Apple),https://www.google.com/podcasts?feed=aHR0cDovL2ZlZWRzLnBvZGlhbnQuY28vY2F1c2VjYXN0cy9yc3MueG1s ( Google),https://open.spotify.com/show/3hmQQrfFDPznEqEAEeRVm8 ( Spotify), https://music.amazon.com/podcasts/67ea3876-ad03-4d6f-814c-c5395544f5c6/Causepods?ref=dm_wcp_podcast_link_th (Amazon), or wherever you get your podcasts. And feel free to drop us a line at mathew@causepods.org.
Follow Mathew on Social Media to stay up to date on Causepods – https://www.facebook.com/MathewPassy (Facebook) |https://twitter.com/MathewPassy ( Twitter) |https://www.instagram.com/mathewpassy/ ( Instagram) |https://www.linkedin.com/in/mathewpassy/ ( LinkedIn)
For help, resources, and community support, please join thehttps://www.facebook.com/groups/causepods ( Causepods Facebook Group) if you are already producing podcasts for a cause or are thinking about launching one.
And if you would like to be a guest on Causepods, please fill out this form and schedulehttps://bookme.name/thepodcastconsultant/lite/causecast-podcast-booking ( your chat here).

Mentioned in this...

What would it feel like not knowing?
For most of our life, we always get to know what's wrong, how to fix it, and what comes next. As we hear today, that is not always the case when it comes to diseases and for many people, they live life, not knowing what's wrong or how long they have.
Our guest Kristine opens up about her story of feeling alone and a passion that came from it to find things in common within the rare disease community to help people feel they are not alone.
Key Topics:
· What is the purpose of the Because We Are Strong podcast (0:58)
· The backstory leading up to why a podcast like this was needed (1:46)
· Dealing with life, without a diagnosis (3:00)
· How common is it to live with a disease and not know what's wrong (4:00)
· What made podcasting the best medium for this cause (6:30)
· What is missing in the podcast landscape that would have helped get started (7:30)
· What has been the impact of the podcast (9:37)
· If you just got started today, what did you need to know (11:00)
· Dealing with guess pitching (13:00)
· How did the RARE apparel clothing company fit into the strategy (15:49)
Website link: http://bwspod.com/ (Bwspod.com)
Podcast Links:
· https://podcasts.apple.com/us/podcast/because-we-are-strong/id1530703166 (Apple)
· https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5idXp6c3Byb3V0LmNvbS8xMzAyNDg3LnJzcw== (Google)
· https://open.spotify.com/show/1VBL2fID9oYf9fwBx2mi3t (Spotify)
Charity: Find Your RARE (https://findyourrare.com/ (website))
Donation: https://findyourrare.com/pages/ourstory (Link)
Social Links
· https://www.linkedin.com/in/kristine-hoestermann-82139a1a2/ (LinkedIn)
· https://twitter.com/findyourrare (Twitter)
· https://facebook.com/findyourrare (Facebook)
· https://redirect.viglink.com/?format=goandjsonp=vglnk_163607898229012andkey=9c32f909009f012c8e816fdd1f242ef2andlibId=kvlr5370010397pu000DLh57xttkwjutiandloc=https%3A%2F%2Ffindyourrare.com%2Fandv=1andopt=trueandout=https%3A%2F%2Finstagram.com%2Ffindyourrareandtitle=RARE.andtxt=%0A%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%0A%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20%20Instagram%0A%20%20%20%20%20%20%20%20%20%20%20%20%20%20 (Instagram)
Thanks for Listening!
Be sure to subscribe onhttps://itunes.apple.com/us/podcast/causecasts/id1398644299?mt=2 ( Apple),https://www.google.com/podcasts?feed=aHR0cDovL2ZlZWRzLnBvZGlhbnQuY28vY2F1c2VjYXN0cy9yc3MueG1s ( Google),https://open.spotify.com/show/3hmQQrfFDPznEqEAEeRVm8 ( Spotify), https://music.amazon.com/podcasts/67ea3876-ad03-4d6f-814c-c5395544f5c6/Causepods?ref=dm_wcp_podcast_link_th (Amazon), or wherever you get your podcasts. And feel free to drop us a line at mathew@causepods.org.
Follow Mathew on Social Media to stay up to date on Causepods – https://www.facebook.com/MathewPassy (Facebook) |https://twitter.com/MathewPassy ( Twitter) |https://www.instagram.com/mathewpassy/ ( Instagram) |https://www.linkedin.com/in/mathewpassy/ ( LinkedIn)
For help, resources, and community support, please join thehttps://www.facebook.com/groups/causepods ( Causepods Facebook Group) if you are already producing podcasts for a cause or are thinking about launching one.
And if you would like to be a guest on Causepods, please fill out this form and schedulehttps://bookme.name/thepodcastconsultant/lite/causecast-podcast-booking ( your chat here).

Mentioned in this...

22 min

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