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Best – so far – of 2024 from the Association
We’re about halfway through the year, and although we have a lot more to share with you this year, we wanted to take a quick pit-stop and do a quick recap of some educational videos and resources we’ve added in 2024.
This won’t be a typical blog post, it will mostly just be embedded video and links out to materials all in one place, but scroll through, as we may stop and highlight some resources or videos specifically that stuck out to us.
Educational Videos
This year, in response to a great response to them last year, we started doing even more interviews around new and exciting research papers and trials. Here are all of them from the start of this year (from oldest to newest):
This one was especially cool to our team. We work with Dr. Michelle Hermiston from UCSF often, but we came across this when the press release went out, and discovered through it that Dr. Hermiston was involved. We then reached out for an interview and were lucky enough to get to speak to the head of the program himself about it.
These next two are both on Malignant Histiocytosis, the pathology and clinical aspects of it respectively. If you would like to see a written version, that covers both of these videos, we did a blog post on just that in June.
Webinars
Firstly, I’d like to point out that our webinars page, since a few months ago, has been organized by disorder, so if you are only looking for more information on one disorder, or general wellness, you can find it more easily.
Here are links directly to the webinars we’ve done so far in 2024:
Histio patients: What diabetes insipidus is (AVP-D / CDI) and how to manage it.
Pulmonary Hypertension in Pulmonary Langerhans cell histiocytosis: Diagnosis and Management
Resources
Note: Not all of these resources, in and of themselves, are brand new, but this is the first year we have featured these particular resources. Also, some resources are location specific, as mentioned in their name, or in parentheses after the link.
Managing Stress: How stress affects you and ways to cope
AVP Deficiency Card (Wallet or Purse Sized)
Credit Counseling of Arkansas (CCOA), Inc.
Little Zebra Fund (SF Bay Area)
California Caregiver Resource Center
NORD Rare Caregiver Respite Program
And just a reminder, the year may be halfway over, but there is plenty of summer to come.
If you’re looking for more fun summer activities and/or looking for new ways to raise awareness for histiocytosis, check out our list of Summer FUNdraising activities: Summer FUNdraising Ideas | Histiocytosis Association
Or, if you are looking for peer support resources, our Ambassador Ana is currently running a Summer Writing Series, which you can still sign up for here, that involves writing prompts to encourage reflection, connection and support.
We hope your year is going well, and that either way, the next half of your year goes even better.
