Makers of pulmozyme offer assistance with cost and information.
Boston MA
Children's Hospital Boston where we have gone for over 7 years and is one of the top children's hospitals in the country if not the world.
Devon Nicole House the place we called home for many months while in Boston with Kylie
.
CF Websites
Norma Kennedy Plourde's website
Norma's web site includes her story, CF information and a ton of helpful CF related links!
Clayton is a 5 yo with Cystic Fibrosis
Includes pictures, links, CF info. and more.
Two brothers that have CF Jacob and Derek. Their story, CF info, links and more.
G-tube information, produts, and supplies
The iron on patch that provides access to g-tubes without damage to clothing.
Have extra g-tube supplies and equipment you do not know what to do with? This web site offers an equipment exhange program for non-rx items .
Other websites
Organ donor website. You can register to be a donor, faqs about organ donation, and stories.
Make A Wish web site. Find out who is eligiable, how to make a donation, how to make a referal and much more!
A wonderful resort in Flordia for kids with life threating illness to go and visit Disney with their familes for no cost.
These are links to various websites I have found helpful.
Funds
Reach For The Stars Foundation helps people with CF in need.
Support
Cystic-l an online support group, that also offers a web site with helpful information and links.
A web site that offers free web pages for patients of CHB. Kylie's has a page there called kyliesupdates. Other hospitals participate in this also.
Pharmacies
Cystic Fibrosis Pharmacy supplies prescriptions to CF patients.
Prescriptions cost reduction programs
Scandi-Pharm is the maker of Ultrase enzyme capsules. They offer
programs to people with CF to help with the cost of Enzymes
vitamins and other needs.
The makers of Prevacid offers programs to help with the cost
of their drugs. There are different programs available to help with your
specific needs.
Links
