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No advertising or solicitation is permitted on the forums. We would like to point out that the purpose of our forums is for the exchange of relevant experiences and the friendly support to other people who share our immunodeficiencies. The forums do not aim to provide detailed medical advice, as we are not able to verify the integrity of the views made through the forums. Members of National Member Organisations (NMO) who wish to ask medical questions may do so via their NMO via telephone or e-mail and they will be helped personally and privately (for contact possibilities see: About IPOPI/Member Orgs).
General Discussion : IPOPI Forums
Please add to our discussion forum. (Please do not use the forum for advertising.)
For The Newly Diagnosed
Posted by: Dayna (---.lv.lv.cox.net)
Date: March 26, 2006 03:35PM Dear Newly diagnosed adults, teens and parents of the newly diagnosed, It makes me a little sad to read through these posts, and see so many of you did not get your questions answered. I wanted to give you a few links that may help you find answers you are looking for. I am the Mom to 3 PIDD kiddos all on IVIG. I don't have all the answers - but I know some places to go to get them. www.igliving.com [www.igliving.com] a new magazine devoted to patients on IVIG, it's free to those living in the US, & you can subscribe online www.immunediseae.com [www.immunediseae.com] A Baxter site, one of the makers of IVIG, there is an informative website. There is a cool thing there my 5 year old likes - it's an immune related video game and some neat patient profiles in the MyStory section. I'd order the newly diagnosed kit they put out as well, it even comes with a CD rom with information www.info4pi.org [www.info4pi.org] a "clearing house" of sorts run by the Modell Foundation. There is a great list of Immunologists on this site, and some things you can order as well. www.primaryimmune.org [www.primaryimmune.org] The Immune Deficiency Foundation They have a wonderful patient and family handbook along with many other great publications, including a school guide. I would make sure to get on their mailing list, they often have events around the US, including a national confrence every 2 years that is very informative. www.jmfworld.org [www.jmfworld.org] The Jeffery Modell Foundation www.midf.org [www.midf.org] Michigan Immune Deficiency Foundation A good collection of links here. [health.groups.yahoo.com] a patient support group on yahoo for adults - it's very active, but can take awhile to get into. [health.groups.yahoo.com] A yahoo group for parents, that is very active. Best to all of you - you are not alone, and there is support out there. Dayna fladfam@cox.net feel free to email me Re: For The Newly Diagnosed
Posted by: charmckay (---.mfd.clearwire-dns.net)
Date: June 18, 2006 08:30AM Thank you for this information. I have been looking and looking and information is not easy to find on CVID and what I have found has been the same. Thank you for posting these links. Sorry, only registered users may post in this forum.
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