Jane has some amazing stories about her experiences (and foreshadowing) with Hemophilia and has the coolest kids on the planet. She has lived a very interesting life and has taught me a lot and given me a of of ideas. The differences in how the community was and how it is now is so different, some good, some bad, but she gives us some great ideas on how to bring the community closer together.
There is a little background notice on this recording so bear with us, this is great content.
Mentioned on the Pod:
CHLA and CHOC
Get 10$ for the survey: Identification of Patient/Parent Mentors & Other Preferred Resources in Bleeding Disorders: Survey Responses Needed…KOLComm, a market research company based in New Jersey, is requesting your help in completing a 10 minute survey. All survey takers will be paid $10.00 for completing the survey in full. The purpose of this study is to understand the challenges of living with bleeding disorders and how patients and parents support each other.
Great thoughts from Jane: Get a Master – find an HTC or doctor that you trust and utilize them. Every trial and hard time happens for a reason and we are all better for it (EVERYone can benefit from this outlook!)
If you want more Jane, head over to her Facebook page!
Thanks again Jane! See you soon 🙂