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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.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
New journals
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 ...
My life - an update
- By Sheela · Posted May 2, 2009
- 3 replies
- In August 2008 i had started feeling unwell again. I knew from the MRI scans that i had another haemangioblatoma on the right side of the cerebellum. I was told by the surgeon that he did not expect it ...
Moms, you rock!
- By TeamInspire · Posted May 1, 2009
- 0 replies
- Looking for a unique and extraordinary way to say "thank you" to your mom? In honor of Mother's Day, good friend of Inspire Dr. Gwenn (of http://www.PediatricsNow.com and http://www.DrGwennIsIn.com) will ...
Final of finals
- By MariaKaminski · Posted April 30, 2009
- 0 replies
- Well I made it. I have one final left today. I went into this semester scared, worried, and wondering if I would ever get through it. Now that its almost over, I feel much better and even a bit accomplished ...
The beginning
- By sissy0513 · Posted April 28, 2009
- 15 replies
- Well, I was faced with having adrenal gland surgery and then found that I have tumors on both and will lose both, at 42 and a single mom this is distressing to me. I have a large amount of stress in my ...
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 ...
Referral Question
- By plischeske · Posted April 22, 2009
- 1 reply
- On December 17th, 2007 I underwent surgery at UCSF in which they removed a pretty big hemangiomablastoma from my cerrabellum. Another Surgeon had tried to remove it back in 1994, but was worried about ...
Thanks to all who all
- By kimcruz6 · Posted April 18, 2009
- 1 reply
- Just wanted to Thank everyone who responded to my journal She is getting medicaid I hounded and harassed senators and legislators enough the reviewed her case and gave it to her.But thank you all for ...
Radio Show - Finding your Philosophy of Care
- By joyceg98 · Posted April 15, 2009
- 0 replies
- Kim Kubilus from National Tay Sachs & Allied Diseases (NTSAD) will speak with Joyce Graff about, "Finding Your Philosophy of Care." Also hear the personal stories of finding a care path from 5 mothers ...
Radio show - managing pain
- By joyceg98 · Posted April 8, 2009
- 0 replies
- Yvette Colón of the National Pain Foundation will be on the phone and internet with Joyce Graff Thursday April 9 at 3 pm Eastern time to talk about managing pain. You are welcome to join the call! Ask ...
VHL versus vHL? What's in a name?
- By joyceg98 · Posted April 8, 2009
- 0 replies
- VHL stands for von Hippel-Lindau Syndrome. It is named for two European doctors whose early descriptions helped to identify and characterize this syndrome. Perhaps you have seen the acronym spelled variously ...
Radiology Benefits Management
- By joyceg98 · Posted April 8, 2009
- 0 replies
- I would like to hear from people who have experienced issues with Radiology Benefits Management (RBM), either pro or con. How is this making life easier or more difficult for you as a patient? If you ...
Lung lesions in vHL
- By TinaDiane · Posted April 5, 2009
- 4 replies
- To all, I don't know if you remember me or not, but several months ago I asked question if any of you have had wierd things show up on your lungs. Many of you were great to respond. I just wanted to let ...
Talk with us about creating a rare disease organization from scratch
- By joyceg98 · Posted April 1, 2009
- 0 replies
- Thursday (tomorrow), at 3 pm Eastern US time, Cathy Sherman, the head of the BHD Family Alliance, will be on the Powerful Patient. Cathy is one of the moderators of the Kidney Oncology listserv. She is ...
Amyloidosis Support Groups and Cool Hot Smooth Jazz
- By Muriel · Posted March 27, 2009
- 0 replies
- From Richard Harris I have just received the first formal review by a noted jazz critic of my new CD, which I am posting on my website (www.RichardHarrisLive.com) today. I thought you might be interested ...
Improving Patient Care - Mary Andrus
- By joyceg98 · Posted March 23, 2009
- 2 replies
- I have a delightful guest lined up for the Powerful Patient this week. Mary Andrus from Easter Seals will join me to talk about the health care implications of the Recovery Act: comparative effectiveness ...
please help my sister
- By kimcruz6 · Posted March 23, 2009
- 4 replies
- Hello my name is kim I am writing in reference to my sister Debi She applied for Suffolk health plans and Medicaid but they said she makes too much so she applied for Suffolk health plan. Is a single ...
Coping with Change
- By MariaKaminski · Posted March 16, 2009
- 0 replies
- We all have ups and downs in life. Hopefully, you have more ups than downs. If you feel your down times are what you have more of, then maybe you need to re examine things. You may be looking at things ...
Spinal Tumors
- By momacookie · Posted March 15, 2009
- 5 replies
- I'm getting ready t have surgery to remove s very large tumor in c6 and c7 of the pinal cord which is just below the neck . Because of the size I'm hopeing there wont be very much problem afterwards ...
Blogging about Obama & Embryonic Stem Cell Research
- By Annette1 · Posted March 15, 2009
- 2 replies
- I blog for a women's health website, empowHer.com. My article has caused some controversy but I remain firmly convinced that lifting the ban on funding will bring us closer to a cure. See what you think ...
