Fw: Polychondritis and congress

[Guest guest]

Polychondritis and congress

Arto! Great News! Thank you for stepping up and making this happen. As you may know I'm a member of the rpolychondritis@... support group, the RP Foundation. Where I co-chair the "foundations" newsletter.

But I also publish the Support Report ( which I just sent you an invite to join) Newsletter. It was started in The UK in '87. Anne , also a part of the Rp support group, now heads that chapter.

Because of the inter-net I have been able to track down doctors and researcher in this field and get profession information about RP. Which is shared with anyone that is a member of the Support Report or who asked for a copy of it. ( U.S. copyright laws forbid me to just transmit articles).

Also because of this More doctors are joining the group. (The Support Report), where they are sharing their knowledge and experience. This could not have happened so quickly before, using postal mail.

Case in-point. I found an article "Polychondritis from Dermatology to Connective Tissue Disorder.) last updated 2/01 I was able to request and obtain reprint permission within 48 hours. So within 72 hours everyone in The Support Report's e-mail list received this special edition. Which included photo's and reference charts.

The inter-net is playing a fantastic role in getting doctors and patients working together and getting information out into the hands of people that need it.

It is also braking down (at least in the US ) the closed door politics that so many doctors have had.

In the past three weeks I have contacted over 200 doctors regarding RP. Only three said they did not know anything about the disease, but they joined the group to learn more. Of the doctors I have been working with. They have me asking the support groups questions from everything from which medications work, what other complications does the RP patient have etc. It is a great learning tool for everyone.

RP being so rare it is really hard for the medical and research professionals to have access to patients in a substantial number to do a full study. Now through the net and groups like the Rpoly, The RP Foundation and The Support Report they do.. The inter-net IS making a difference.

Hope this helps.

R.

skyfireranch@...