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Financial issues
Discuss the impact of having a rare disease on your financial health. Have you found resources that others should know about?
How To Pay For surgery
- By ilene123 · New reply November 20, 2009
- 2 replies
- There are so many like myself that find themselves unable to pay for surgery. I have hyperaldosteronism and need the surgery but cant afford it.I have been out of work in N.C. since dec,2008.Have any ...
Life after Tarlov cyst surgery
- By irma09 · New reply October 30, 2009
- 26 replies
- My daughter had TC surgery done in K. City, on May 19th 09 by Dr Fiegenbaum. I think he is one of the handful of Nueros in the country who knows how to do the surgery. Most neuros told her that Tarlov ...
Wheelchair Lift?
- By SickOfBeingSick · New reply October 15, 2009
- 5 replies
- I have a wonderful motorized wheelchair that a lovely lady gifted me when her husband died. However, it just sits in my shed. I can't use it because I don't have a lift to put it on the back of my car ...
Isaacs Syndrome
- By coxter · New reply October 8, 2009
- 6 replies
- Good Day, My name is Mike Cox and I am a 40 year old male, diagnosed with Isaac’s almost 10 years ago. I have been experiencing symptoms for nearly 13 years, everything from stiffness to spasms. I have ...
"Odd" source for supplies
- By mommabirdi · New reply August 29, 2009
- 3 replies
- Hello, everyone. I have primary lymphedema (LE) in both of my legs. This is also referred to as Milroy's disease as the kind of LE that I have is congential. I have to use a "ton" of bandages and compression ...
jobs for Disabled
- By mike23 · New reply July 29, 2009
- 5 replies
- i have a rare disease called Frederich's Ataxia and over the years it got worse up to the point i cant walk and live life in a wheelchair, everyday is a struggle i try to make the best of it and want ...
hypospadias patient
- By dazy · New reply July 4, 2009
- 7 replies
- Hi i m 30yr old guys.i need help to did the surgery for hypospadias. i have insurence also but its a conginital desease so no insurence cover it and its a complex surgery so it cost around 2000US$. can ...
Parvovirus B19 is NOT "Just a children's Disease"
- By Delilah · New reply June 28, 2009
- 19 replies
- Hi, I sent you an email via the friends link. Hopefully you get it, I have never sent one before. I got Parvovirus B19 in September 2003 and I still suffer from very debilitating symptoms almost 4 years ...
Kansas City
- By ymmatoj · New reply April 2, 2009
- 2 replies
- Can any one give me ideas on how to pull off a successful fundraiser. I have to make a trip to Kansas City for neurosurgery in May. My financial situation has hit rock bottom and I would just like some ...
Sources for Financial Help; Transportation; Surgery; Housing, etc.
- By dizzybee · New reply March 24, 2009
- 2 replies
- I am in no way affiliated with any of the links/names I am about to post. I just happened upon them. Transportation Assistance: Air Charity Network The Medical Transportation Reimbursement Fund (the MOTOR ...
Need some advice/help desperately
- By hmhanely · New reply January 22, 2009
- 6 replies
- Hi All! I am in need of some serious advice or help. I have no insurance and have been diagnosed with Addison's Disease, pituitary tumor, colitis, severe migraines, severe abdominal pain and swelling ...
traveling/lodging help
- By tuckers01 · New reply January 3, 2009
- 2 replies
- Hi! I had a question for you all. Does anyone know of charity organizations or local organizations in Cleveland OH and Pittsburgh PA that help with traveling and lodging? We are flying with my son to ...
this was put out by Don Williams friend of Micheal Poulson
- By pita · Posted September 20, 2008
- 0 replies
- Helping One, Who Helps Others! featuring Gospel, Blue Grass, and Country Singers and bands PLUS, an Auction, Food, Horseshoe Tournament and Carnival Games Friends of Cherokee County Firefighter / Fire ...
Caudal Regression Syndrome
- By bakerfamily · New reply August 30, 2008
- 2 replies
- My son was diagnosed at birth. I immediately applied for disability for him. It took 30 days before I could get an appointment with Social security disability. After 4 months my request was denied. Apparently ...
moya moya and family support
- By suzQ · New reply August 19, 2008
- 6 replies
- This is my first post: I am on a power search to help our (a community of over 500) friend Killagrrrl (Donna) who "went down" on New Years Even, in SanFRan (she is from NYC) - and...yeah - moya moya aneurism/brain/coma ...
How to setup a chapter in the USA of a Dutch worldwide patientorganisation
- By LexVanDerHeijden · Posted May 21, 2008
- 0 replies
- The worldwide CMTC organisation, based in the Netherlands, would like to setup an American chapter operating under the worldwide organisation. What are the legal, financial and tax implications? Any tips ...
learning to write grants
- By hkirkwood · New reply May 19, 2008
- 5 replies
- Actually, I'm putting this question here because I don't know where else to put it. It doesn't really fit with the current subject headings - so if I could suggest a new subject catagory how about something ...
Help for adult with Henoch Schonlein Purpura
- By camae · New reply May 9, 2008
- 3 replies
- I have been caring for my 22 yr old son for the last year. He was diagnosed with HSP in Oct of 2006. He has been unable to work since it first appeared and has accumulated more than 80,000.00 in med debt ...
Turners Syndrome
- By carrieroman · Posted April 28, 2008
- 0 replies
- So is there anybody that knows what I can do to get help. My daughter is 4 and was diagnosed withTurners Syndrome about 2 years ago. She has been taking hormone injections everyday since. Now we had to ...
Hunter Syndrome
- By nimfa_dabu · New reply April 15, 2008
- 5 replies
- Hi, i'm Nimfa, 33 years old, from Philippines. My 2 sons were diagnosed with Hunter Syndrome. There is available medicine SHIRE but I could not afford it. Please help me find donors so we could help my ...
