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Innehåll tillhandahållet av BloodStream Media. Allt poddinnehåll inklusive avsnitt, grafik och podcastbeskrivningar laddas upp och tillhandahålls direkt av BloodStream Media eller deras podcastplattformspartner. Om du tror att någon använder ditt upphovsrättsskyddade verk utan din tillåtelse kan du följa processen som beskrivs här https://sv.player.fm/legal.
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Ep. 31: MyBDC w/ Michelle Witkop and Maria Santaella - September 23, 2019

1:03:48
 
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Manage episode 242710944 series 1362347
Innehåll tillhandahållet av BloodStream Media. Allt poddinnehåll inklusive avsnitt, grafik och podcastbeskrivningar laddas upp och tillhandahålls direkt av BloodStream Media eller deras podcastplattformspartner. Om du tror att någon använder ditt upphovsrättsskyddade verk utan din tillåtelse kan du följa processen som beskrivs här https://sv.player.fm/legal.

As a member of the rare disease community, bleeding disorder patients and their families are used to taking surveys, signing up for clinical trials, and/or sharing our thoughts about what it is like living with a bleeding disorder. So what makes this new initiative from the National Hemophilia Foundation (NHF) different? Join us for a conversation with NHF Head of Research, Michelle Witkop and Research Nurse Specialist, Maria Santaella as they share the details of MyBDC, a community-powered registry aimed at capturing the patient experience. MyBDC is a comprehensive, personalized registry that focuses on the entire family unit. Want to learn more? Join us for an in-depth conversation about MyBDC on Ask the Expert!

Welcome to Episode 31 - or our In-Depth Look into MyBDC Episode- of the Ask The Expert Podcast!

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

For more information and to enroll in MyBDC, click the link: mybdc.hemophilia.org

For specific questions email research@hemophilia.org

The enrollment process will take 2 to 3 minutes. Each family member, caretaker and/or patient will need to enroll. The initial survey will take 20 to 30 minutes.

All members of the family unit are encouraged to enroll. Patients, siblings, grandparents, caretakers, parents are able to enroll and create their own account. Currently, the platform only accepts adults, but a children’s portal is being created.

NHF has a newsletter, and research information is included. To sign up for the newsletter, visit www.hemophilia.org and scroll to the bottom of the page for the link.

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

  continue reading

44 episoder

Artwork
iconDela
 
Manage episode 242710944 series 1362347
Innehåll tillhandahållet av BloodStream Media. Allt poddinnehåll inklusive avsnitt, grafik och podcastbeskrivningar laddas upp och tillhandahålls direkt av BloodStream Media eller deras podcastplattformspartner. Om du tror att någon använder ditt upphovsrättsskyddade verk utan din tillåtelse kan du följa processen som beskrivs här https://sv.player.fm/legal.

As a member of the rare disease community, bleeding disorder patients and their families are used to taking surveys, signing up for clinical trials, and/or sharing our thoughts about what it is like living with a bleeding disorder. So what makes this new initiative from the National Hemophilia Foundation (NHF) different? Join us for a conversation with NHF Head of Research, Michelle Witkop and Research Nurse Specialist, Maria Santaella as they share the details of MyBDC, a community-powered registry aimed at capturing the patient experience. MyBDC is a comprehensive, personalized registry that focuses on the entire family unit. Want to learn more? Join us for an in-depth conversation about MyBDC on Ask the Expert!

Welcome to Episode 31 - or our In-Depth Look into MyBDC Episode- of the Ask The Expert Podcast!

Disclaimer: The content contained within Ask The Expert is for informational purposes only. Please consult your healthcare provider before making any decisions about treatment or changes in physical activities.

For more information and to enroll in MyBDC, click the link: mybdc.hemophilia.org

For specific questions email research@hemophilia.org

The enrollment process will take 2 to 3 minutes. Each family member, caretaker and/or patient will need to enroll. The initial survey will take 20 to 30 minutes.

All members of the family unit are encouraged to enroll. Patients, siblings, grandparents, caretakers, parents are able to enroll and create their own account. Currently, the platform only accepts adults, but a children’s portal is being created.

NHF has a newsletter, and research information is included. To sign up for the newsletter, visit www.hemophilia.org and scroll to the bottom of the page for the link.

BloodFeed: https://www.bloodfeed.com

Connect with BloodStream Media:

Find all of our bleeding disorders podcasts on BloodStreamMedia.com

BloodStream on Facebook

BloodStream on Twitter

Subscribe to BloodStream:

iTunes: http://bit.ly/bloodstreamitunes

Stitcher: http://bit.ly/bloodstreamstitcher

LibSyn: http://bit.ly/bloodstreamlibsyn

SoundCloud: http://bit.ly/bloodstreamSC

TuneIn: http://bit.ly/bloodstreamtunein

Google Play: http://bit.ly/bloodstreamPlay

Spotify: http://spoti.fi/2nNPhui

  continue reading

44 episoder

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