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VHL Alliance

Von Hippel-Lindau (VHL) support group and discussion community

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VHL Alliance

New Feature - Inspire Reactions

ErikInspire's journal

ErikInspire

new-feature-inspire-reactions

200150

Earlier this year, we had a wonderful discussion with all of you about Facebook-style “Like” buttons on Inspire, and all of the positives and negatives that are associated with them. Through more than 200 replies we heard from many of you with widely differing opinions. The overwhelming consensus was that, while the idea of being able to give reactions to posts and comments could be ... Read More

VHL Alliance

What not to say to a cancer patient

Cancer-Inspire's journal

Cancer-Inspire

what-not-to-say-to-a-cancer-patient

200150

By Radha_Inspire Digital Editor, Inspire A Personal Health column at the New York Times today discussed what to say and, crucially, what not to say, to cancer patients based on a book called Loving, Supporting and Caring for the Cancer Patient by Dr. Stan Goldberg, a prostate cancer patient and communications specialist at San Francisco State University. Any type of discussion about ... Read More

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VHL Alliance

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200150

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

VHL Alliance

Art and illness

Cancer-Inspire's journal

Cancer-Inspire

art-and-illness

200150

By Radha_Inspire Digital Editor, Inspire After being approached last year to contribute a drawing to a how-to art book, Inspire member Shoshi (Shoshiplatypus) was thrilled and, despite being mid-chemotherapy for colorectal cancer, decided she couldn’t say no. But the commissioned piece was meant to describe her still-ongoing cancer journey. Although Shoshi, who also has myalgic encephalomyelitis ... Read More

VHL Alliance

Voice-to-Text Typing and Other Recent Changes

ErikInspire's journal

ErikInspire

voice-to-text-typing-and-other-recent-changes

200150

  • 155 Replies )
  • Processing ...

You’ve probably noticed for the last few days the new little microphone that has appeared on the right side of text boxes when you write a new post or comment. That new feature is called Voice-to-Text. If you click on it, and if you have a microphone, you can speak your text instead of typing it and have it appear on the screen. If you have a phone or tablet, this should happen automatically ... Read More

VHL Alliance

What’s the story of your rare disease diagnosis?

Brian's journal

Brian

whats-the-story-of-your-rare-disease-diagnosis-1

200150

Dear members, Today, more than 200,000 Inspire members have a rare condition. You have made Inspire a place to share your experiences with others who understand what you’re going through and help others at the same time. Many of you have described how long it took for you to receive an accurate diagnosis for your rare condition, while some of you found your diagnosis quickly. If you’d ... Read More

VHL Alliance

Carolinas Kidney Cancer Patient/Survivor Conference

Mickeral's journal

Mickeral

carolinas-kidney-cancer-patient-survivor-conference

200150

Dear Fellow Travelers: Just a reminder for those of you within driving distance of Chapel Hill, North Carolina that registration and seats are still available for the Carolinas Kidney Cancer Patient/ Survivor Conference will be held Saturday, December 10, 2016 at the Friday Center on the UNC Campus. There is no cost to attend this informative event; meals and snacks are furnished ... Read More

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VHL Alliance

VHL and the Kidneys

In: Other discussion

VHL_Wellness

vhl-and-the-kidneys

200150

Please join us on Monday, December 5th to discuss the kidneys from the perspective of VHL patients & caregivers. All are welcome to join—whether you have personal experience with VHL in the kidneys or you want to learn more from others’ experiences. There will be time near the end of the call for an open discussion of other VHL-related topics. The discussion will be facilitated by ... Read More

VHL Alliance

2016 Almost to an End.

embalmer23's journal

embalmer23

2016-almost-to-an-end

200150

Tomorrow is Thanksgiving. I am thankful for SO many things in my life. I am thankful to have such amazing parents; for a wonderful family; thankful to have a job; thankful for a loving husband and in-laws; thankful for a roof over my head; thankful to have had a relatively healthy 2016. In a couple of months, it will be my three year anniversary of my brain surgery. It is truly crazy ... Read More

VHL Alliance

The Chronicles of the Paines, our Journey with VHL

In: Fundraising and raising awareness

shawnap72

the-chronicles-of-the-paines-our-journey-with-vhl

200150

Muncie IN, 1973 my wife's life changed forever, the miracle of her surviving that event is nothing short of miracle, the story keeps changing as we learn more. Shes not suppose to be here, I heard that alot, Her spirit is that of a guarded Angel on earth. The chronicled journey she took would take the toughest man on the planet and reduce him to a babbling buffoon. We met 20 years ... Read More

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