Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

Finding emotional support

Anxiety? Depression? Fear? Discuss how your diagnosis has made you feel and offer or ask for support here.

tellin someone new you have vhl

By batley · New reply June 7, 2008
10 replies
hi everyone ok ive come up with a problem , ive got a date , wow a date , anyway, im worried as far as this man knows im heathy and fit im really sceared after what my ex hubby did or should i say took ...

Are you reading this?

By gale · New reply June 3, 2008
8 replies
As most of you know, this site has made a lot of changes and we, the VHLFA have also made changes. We have made a number of changes to help support our VHL Family, to better serve your needs and continue ...

obtaining vhl wristbands in the UK

By funmadjoker · New reply May 2, 2008
6 replies
Hi all, any idea how I can get my hands on a few of the blue vhl wristbands in the UK, I've tried contacting Tracey as while back and haven't managed to obtain some ...

Support community at Inspire / ClinicaHealth

By joyceg98 · New reply April 29, 2008
1 reply
We have heard from a number of people about things in this new version of Inspire that are either confusing, or not what you would have wished for. Everyone at VHLFA and Inspire want you to be happy and ...

Complaints

By funmadjoker · New reply April 29, 2008
14 replies
Does anyone have any tips on writing a letter of complaint as the various hospitals can't seem to manage to get any of my appointments right or end up forgetting about me all together ...

Recovery from surgery

By SarahMcAneney · New reply February 10, 2008
3 replies
Hello all. I'm writing this on behalf of my wife Sarah who has just had a tumor and cyst removed from her brainstem. The surgery went as well as we could have expected and she is on the road to recovery ...

North East England UK

By funmadjoker · New reply January 26, 2008
3 replies
Are there any vhl support groups in the Durham area (close to Newcastle for those in the UK lol ...

A prayer please!

By Myway · New reply January 11, 2008
25 replies
Please would you say a prayer for my son who is facing brain surgery once again on the 7th Dec. to remove a tumour with a large cyst that is pushing up againest his brainstem and causing him many problems ...

brain tumor removal

By christytaylor · Posted December 30, 2007
0 replies
I was wondering if there is anyone out there, that has had a brain tumor removed from the brain stem along with a cyst. If there is someone, i was wondering how long it took for you to get usage if you ...

kidney

By gayle52 · Posted November 17, 2007
0 replies
hi my brother who has vhl. and has one of of his kidney out, the other one has cancer tourmers and they are going to take it out, my brother is 53 and has dibetus and has had 3 heartattacks, they have ...

new findings

By sarahleigh · New reply November 16, 2007
3 replies
My VHL history includes 2 pancreatic surgeries, 1 partial nephrectomy, liver biopsy, two eye surgeries. My last trip to NIH results, include: stable kidney lesions (bilaterally), stable pancreas and adrenal ...

Good patient resource

By sarahleigh · Posted November 15, 2007
0 replies
Check out this link: http://www.thewellnesscommunity.org/# The group offers many supportive classes, resources, groups for all patients with cancer and rare diseases. The Bethesda, MD location is close ...

Meetings

By donnainflorida · New reply October 30, 2007
1 reply
Joyce, Do you know yet approx when & where the next annual meeting will be? I would like to attend if possible, and would like to plan ahead. Thanks PS Maybe we should have a miscellaneous topic. I didnt ...

family support groups?

By lsaunders · New reply October 26, 2007
1 reply
Hi...I live in northern California...my father died in 1985 of VHL, and my brother has been battling with it, in one form or another, for MANY years...I am the only child living in California with my ...

Fundraising

By Beverly2 · New reply October 5, 2007
14 replies
Fundraising has been a hot topic around our house lately...seems to empower us a bit. I have plans to set up a pancake breakfast this summer. I have also looking into publishing a cookbook with recipes ...

You are not alone...

By djfj007 · Posted October 4, 2007
0 replies
I am writing in regards to a friend of mine who recently had a VHL tumor removed from his ear. I feel that the best emotional support comes from friends and family. He is currently still in the hospital ...

Location in the UK

By funmadjoker · New reply August 27, 2007
5 replies
Is there anyone located in the North East of England in the UK ...

The You Can Do It Speech

By beccaloo · New reply August 19, 2007
4 replies
Okay, third post of the day from me, if you're counting! The summer is flying by and I'm getting more and more nervous. Every now and then I just get this wave of angst and fear. In short (I promise I'll ...

Voting for ClinicaHealth

By joyceg98 · Posted August 17, 2007
0 replies
There is a conference coming up in California. One of the topics there is "Social Media for Patients." The organizers of the conference are holding a "People's choice award" to choose the company that ...