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!
Joyce's Journal
Pheochromocytoma or Paraganglioma?
- By joyceg98 · Posted November 17, 2009
- 0 replies
- Oxford Outcomes has asked us to post this notice. Oxford Outcomes is conducting a qualitative research study involving interviews with pheo/para patients in order to evaluate the clarity, relevance, and ...
DCLG meeting
- By joyceg98 · Posted October 20, 2009
- 0 replies
- I'm back from Europe, now in Washington at the NCI Director's Consumer Liaison Group meeting (DCLG) -- NCI is the National Cancer Institute (US). The meetings are open, and are being webcast if you are ...
Visit to Netherlands
- By joyceg98 · Posted October 12, 2009
- 0 replies
- Sunday and Monday I have met with a series of physicians here in the Netherlands, talking about how VHL is managed here, and learning from their experiences. In the Netherlands there are two primary centers ...
Netherlands VHL meeting
- By joyceg98 · Posted October 11, 2009
- 2 replies
- I flew to Europe on Thursday night, arriving Friday morning in Brussels, where I was met by a friend of Chris Hendrickx, the chairperson for Belgium. I stayed with Chris and her husband near Antwerp for ...
Urologist in Phoenix area
- By joyceg98 · Posted September 23, 2009
- 7 replies
- We have a member who is looking for a good urologist in the Phoenix, Arizona, area. Any suggestions? Thank you, Joyce ...
Men with kidney cancer - reviewers needed ASAP
- By joyceg98 · Posted September 23, 2009
- 0 replies
- This offer will be over shortly. This is a different kind of marketing company that is supposed to specialize in education. You can read about them on their website www.healthed.com They are looking for ...
Does she or doesn't she???
- By joyceg98 · Posted September 9, 2009
- 10 replies
- When people are told they may be "mosaic" for VHL or any other disease, what nagging questions are they left with? If you are in this situation, could you please share the unanswered questions you have ...
undiagnosed stomach problems?
- By joyceg98 · Posted September 3, 2009
- 2 replies
- Today's Powerful Patient interview is with Dr. Stephen Wangen, an expert in Irritable Bowel syndrome. He will talk with us about those non-descript abdominal symptoms that are so hard to diagnose, including ...
People with disabilities fighting cancer
- By joyceg98 · Posted September 1, 2009
- 0 replies
- We have been asked to post the following information. This study is seeking participants. "Any adult cancer survivor who had a functional limitation that existed prior to their cancer diagnosis and has ...
Nutrition to Enhance the Immune System
- By joyceg98 · Posted July 21, 2009
- 6 replies
- This week's interview is with Haylie Pomroy, the nutritional consultant who spoke at our Anaheim meeting in June. She is really terrific, and I know you will enjoy hearing what she has to say. Please ...
Jacomet on Happiness
- By joyceg98 · Posted July 15, 2009
- 0 replies
- Pierre Jacomet, a philosopher and television personality in Chile, has a new blog. http://jacomet.olivoediciones.net/ Pierre has von Hippel-Lindau, and chairs our affiliate group in Chile. He will be ...
Did you attend the conference? Why? or Why not?
- By joyceg98 · Posted July 2, 2009
- 6 replies
- 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 ...
Questions about how drugs get approved?
- By joyceg98 · Posted June 24, 2009
- 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 ...
Tornado
- By joyceg98 · Posted June 18, 2009
- 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 ...
Are you ready for an emergency?
- By joyceg98 · Posted June 3, 2009
- 0 replies
- This week's radio show features two members of the Police and Public Health departments of the Town of Brookline, talking about what they are doing to prepare for emergencies -- everything from avian ...
Trouble losing weight?
- By joyceg98 · Posted May 27, 2009
- 5 replies
- Tomorrow Thursday May 28, 3 pm Eastern US time, I will be speaking with Brett Salisbury, a Certified Sports Nutritionist, about weight and health. Several times people have told me that they need to take ...
Questions about Transplant?
- By joyceg98 · Posted May 6, 2009
- 3 replies
- Thinking about whether to sign that donor card at the registry of motor vehicles? Or are you in a situation where you could benefit from a donated organ? Bring your questions about transplantation to ...
Pheochromocytoma/paraganglioma study
- By joyceg98 · Posted May 6, 2009
- 1 reply
- Something that may be of interest to some of you - message I received this morning. -- Joyce I am a researcher with Oxford Outcomes. We specialize in patient reported outcomes. We are currently recruiting ...
Play about Brain Tumors and VHL - this Saturday!
- By joyceg98 · Posted May 5, 2009
- 0 replies
- Please join us this Saturday night in Providence, Rhode Island, for the first play ever about VHL! Join us For a unique experience Food - Fun -- Meet the Artist Hear Amy Lynn's remarkable story. Neo-burlesque ...
Doctors handcuffed on natural remedies
- By joyceg98 · Posted April 22, 2009
- 3 replies
- Dr. Mary Zennett joins me Thursday at 3 pm Eastern US time to talk about why doctors feel constrained not to speak with us about natural remedies. It's on the internet! If you can read this announcement ...