Adrenal Insufficiency Oregon

03/18/2023

It's not too late to register for the conference in Portland!!
https://united4rare.org/aiu-csrf-conference-2023/

Also if you have a child with AI who is under the age of 18 message us if you are driving from a distance and need a hotel room. We have some funding available.

02/18/2021

Good morning Oregon! Can you help me real quick? Want to help save a babies life? All it takes is a quick signature to add SMA to Oregon NBS! As many of you know, my son Tristan’s life was saved because his rare medical condition was caught early on due to newborn screening. We now have the chance to add SMA to the screening! Click the link below to sign on and please share! ❤️❤️❤️

https://secure2.convio.net/fsma/site/SPageNavigator/Action%20Center/Oregon_Newborn_Screening_Letter.html

To add your name to this Oregon-only sign-on letter, please complete the below information. By completing and submitting the requested information, you are agreeing to have your name, city and state (for Oregon residents only) listed as a signer of the letter. See sample below): EXAMPLE LISTING:

02/09/2019

Can't attend our conference in person? We'll be live streaming it for our member, learn more by reading our news brief. - https://mailchi.mp/aiunited/live-streaming-conference

04/16/2018

We hope you'll join our town hall on rare disease and help our legislators know how they can help! https://www.facebook.com/events/360913637746429/

01/17/2018

Registration for AIU's first conference on Adrenal Insufficiency is now open!

11/10/2017

Be sure to like our new regional page! https://www.facebook.com/AIUakidorwa/
On Saturday this page will be archived. We're looking forward to collaborating with our neighboring states.

Show your support for those living with Adrenal Insufficiency, by joining our page. Let's bring the

11/07/2017

Please head over and LIKE our new regional page. In a few days this page will be deactivated. We are excited about working with our Northwest neighbors in AK, ID, and WA
https://www.facebook.com/Adrenal-Insufficiency-AK-ID-OR-WA-214604242412781/

Show your support for those living with Adrenal Insufficiency, by joining our page. Let's bring the

11/06/2017

HELLO! To help make our pages more dynamic and active we will be organizing states into regions. Oregon, Washington, Alaska and Idaho will be merged into one page. We will also do the same on our website with a soon to be added interactive map so we can post events or opportunities for get togethers. The name of the page will change to Adrenal Insufficiency Northwest.

09/01/2017

If you're near Portland, OR here's a support group meeting for you!

07/16/2017

Some important news for Oregonians!

The story of how one rare disease group used cupcakes to help make a new law to protect their loved ones.

04/12/2017

ASK THE HEALD CARE COMMITTEE TO VOTE YES ON SB 808
(Newborn Screening)

Senator Laurie Monnes Anderson
Capitol Phone: 503-986-1725
Email: Sen.LaurieMonnesAnderson@oregonlegislature.gov

Senator Jeff Kruse
Capitol Phone: 503-986-1701
Email: Sen.JeffKruse@state.or.us

Senator Elizabeth Steiner Hayward
Capitol Phone: 503-986-1717
Email: Sen.ElizabethSteinerHayward@oregonlegislature.gov

Senator Lee Beyer
Capitol Phone: 503-986-1706
Email: Sen.LeeBeyer@oregonlegislature.gov

Senator Tim Knopp
Capitol Phone: 503-986-1727
Email: sen.timknopp@oregonlegislature.gov

04/12/2017

ASK THE JUDICIARY COMMITTEE TO VOTE YES ON SB 215
(Rare Data Base for Emergency Treatment)

Floyd Prozanski
Capitol Phone: 503-986-1704
Email: Sen.FloydProzanski@OregonLegislature.gov

Kim Thatcher
Capitol Phone: 503-986-1713
Email: Sen.KimThatcher@state.or.us

Michael Dembrow
Capitol Phone: 503-986-1723
Email: Sen.MichaelDembrow@state.or.us�Twitter:

Dennis Linthicum
Capitol Phone: 503-986-1728
Email: sen.DennisLinthicum@oregonlegislature.gov

James I Manning Jr.
Capitol Phone: 503-986-1707
Email: Sen.JamesManning@oregonlegislature.gov

03/01/2017

More Rare Disease Stories! http://www.gazettetimes.com/news/local/event-aims-to-detsigmatize-rare-diseases/article_68fae9a0-5a42-5512-b8f3-f2892f53ecbc.html?utm_medium=social&utm_source=twitter&utm_campaign=user-share

Matthew Rockhold said it took four months on a waiting list and his fourth su***de attempt to get help with his unusual form of bipolar disorder.

02/26/2017

Tuesday is Rare Disease Day and we are organizing fundraisers at all three Papa's Pizza locations in Eugene and Springfield and one in Beaverton. We hope you will join us at one of these locations to enjoy some pizza, learn more about rare diseases, and help raise money to support change where it is desperately needed. Although the flyer specifies AIU, our work encompasses all those affected by a rare disease. Specifically, there are three bills in the legislature we are actively working to pass.
1. Prescription Cost Sharing (no additional charges for prescription after your co-pay)
2. Expanded Newborn Screening (catching a disease/disorder at birth will increase the chances for the best outcome possible)
3. Rare Disease Treatment Data Base (assuring that emergency medical personnel have the information they need to effectively treat rare disease/disorders)

02/22/2017

Here's another Rare Disease Day event in Oregon...
The Disability and Social Interaction Lab is researching ways to provide information and support to people with rare disorders to reduce the stigma of feeling alone. On Rare Disease Day, February 28th, from 9-5 PM, we will host an event in Oregon State University's Memorial Union Quad. Join us for awareness-raising games and prizes! Take a selfie with our sign saying "I'm rare because..." and share on social media .

02/14/2017

We need people in Salem on Thursday!

02/03/2017

Please let us know if you are able to come to our Rare Disease Lobby Day February 16th in Salem. It would be great to have a big showing! If you live in the Eugene/Springfield area we're also having events there.