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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.
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Did you attend the conference? Why? or Why not?
- By joyceg98 · Posted July 2, 2009
- Journal · 1 reply
- Let's talk about the pros and cons of attending a patient conference. What are the benefits? or what kept you away? We would like to learn, so that we can serve you better. http://bit.ly/14wRzy The radio ...
Heading to Maryland Sunday and Hare Krishna
- By FridayThe13th · Posted July 2, 2009
- Journal · 1 reply
- It's almost that time. Time to go get this over with. One more day at work then the infamous "VHL Vacation" I just keep reminding myself..."It is what it is". I stopped the other day to think about it ...
Watch out for Prozac!
- By investigator2009 · Posted July 1, 2009
- Discussion in Health management issues · 0 replies
- My mother has VHL, and we all know that there is something different in each of us that changes our health state. Well, for her, tumor growth always happens when she is stressed or depressed. At both ...
My son
- By Porq · Posted July 1, 2009
- Journal · 3 replies
- May 7th, 2009 is a day that I will never forget. It started out with that dreaded phone call at work insisting that I get home immediately. What was supposed to be a somewhat normal doctors visit for ...
VHL???Maybe???
- By Porq · Posted July 1, 2009
- Discussion in Getting a diagnosis · 6 replies
- My son recently spent a month at Mayo Eugenio Litta Children's Hospital to stabilize his bp and lower his heart rate before they could take out his 3 pheos and both adrenals. During this time he was tested ...
tumours on the optic nerve
- By diaryofageneticdefec · Posted June 30, 2009
- Discussion in Health management issues · 0 replies
- I've known about the tumour on my opic nerve for over 10 years now. It grew a little when i was pregnant a couple of years ago but just this week it bled. I'm waiting to hear from my consultant what he ...
Care Plans in the UK
- By joyceg98 · Posted June 29, 2009
- Discussion in Health management issues · 4 replies
- I understand that the UK National Health System has set a goal that everyone with a long-term condition be offered a Care Plan by June of 2010. Has anyone approached you about this? Have you requested ...
thanks for support
- By teray · Posted June 29, 2009
- Journal · 0 replies
- thank you to everyone who responded. We will be better prepared with questions for our appointment in boston ...
living with vhl is difficult
- By teray · Posted June 24, 2009
- Discussion in Finding emotional support · 3 replies
- looking to discuss ways of living with vhl disease ...
support
- By teray · Posted June 24, 2009
- Journal · 5 replies
- Help my husband is living with vhl had a pheo removed 10 years ago. Its back but cant locate it. Also has a cyst in the brain is living with severe pain in arms and legs. There are days weeks months he ...
Questions about how drugs get approved?
- By joyceg98 · Posted June 24, 2009
- Journal · 1 reply
- I'm talking this afternoon (Wednesday) with Marlene Haffner, former head of the Orphan Drug section of the FDA. This came up relatively quickly, as we had to squeeze it into her busy schedule, but the ...
Frustration and false starts
- By joyceg98 · Posted June 21, 2009
- Discussion in Getting a diagnosis · 0 replies
- We are looking for frustrating stories about a delayed diagnosis of VHL, to help young doctors learn. Were you told it was something else, only to lose valuable time in identifying the real problem? I ...
VHL and Livestrong
- By lifeandhope · Posted June 19, 2009
- Discussion in Fundraising and raising awareness · 1 reply
- Great news about Livestrong adding VHL to it's dropdown box of types of cancer!!! This is great exposure ...
Support and Other Things
- By FridayThe13th · Posted June 18, 2009
- Journal · 2 replies
- First of all I just wanted to say thank you to everyone who replied to my last post. I think I was a little overly emotional when I posted that entry, but no it wasn't a cry for help or anything of the ...
Tornado
- By joyceg98 · Posted June 18, 2009
- Journal · 5 replies
- Well, this week I got to Practice what I've been preaching about emergency preparedness. I went to Memphis to celebrate my mother's 92nd birthday and spend some time with her and my Dad, who is 91 and ...
Share your story via video!
- By TeamInspire · Posted June 15, 2009
- Journal · 28 replies
- Sometimes the most powerful message each of us can share is our personal story -- our own experience. With upcoming healthcare legislation pending, one way we can be advocates is to share these stories ...
Group Discussion
- By ZeshanAhmad · Posted June 15, 2009
- Discussion in Parenting issues · 1 reply
- i want to talk for the group discussion any one willing to conversate ...
Son born with no eyes
- By ericmab · Posted June 15, 2009
- Discussion in Finding a doctor · 6 replies
- My first child was born on May 4, 2009 with a rare genetic condition known as Fraser's Syndrome. His eyes are covered by skin and, according to our surgeon, the MRI's suggest that his globes are useless ...
Amyloidosis Support Groups Inc.- Mayo Clinic Breast Cancer and More
- By Muriel · Posted June 15, 2009
- Journal · 0 replies
- Mayo Clinic invites patients, families and caregivers interested in breast cancer and hematologic malignancies to special dinner lectures and a wellness program at the Ritz Carlton on Amelia Island, Florida ...
I am excited
- By kimberly4562 · Posted June 11, 2009
- Journal · 0 replies
- I hope I win this art contest!! You can enter too, but i hope you vote for me(: http://artcontest.mind2it.com/blogs/mind 2it.html ...
