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October NOMID Alliance Advocacy & Awareness Efforts 
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Autoinflammatory Disease

Awareness, Advocacy & Research


 

Protect Federal Support for Rare Diseases, NIH & FDA Funding

As part of the Budget Control Act of 2011, a budget cut between 8.5% to 10% of all Federal programs will take effect at the end of the year. This also includes cuts to research funding at the National Institutes of Health (NIH), the leader in autoinflammatory disease research in the US.

Please take a moment to contact your elected officials today and customize this online email letter to address your concerns about cuts to NIH and FDA funding with this budget control act, and ask them to support funding for rare diseases today. You can also read more about this act on the NORD Legislative Action Center at the same website.

This is an advocacy action alert that was shared with us from the National Organization for Rare Disorders (NORD). The NOMID Alliance is a NORD Member Organization.

EveryLife Foundation Matching Donations for The NOMID Alliance via Text to Donate through
Oct. 31st.

Please Donate Today! 

Please support The NOMID Alliance this month with a $10 donation through the Text to Donate Matching Gift Program with the EveryLife Foundation. Every donation (up to $1000) will be matched, and all donations will benefit The NOMID Alliance. Text "RARE" on your cell phone to 85944 and $10 will be donated, and matched by the EveryLife Foundation so it will equal $20 donation to The NOMID Alliance. This program ends on October 31st, so please donate today! Thank you. Please share this email will others to help us to reach our goal.

These funds will help support research for autoinflammatory diseases. All donations are tax deductible in the US. To have the funds matched by the EveryLife Foundation they must be donated at this link and with a US cell phone. We also accept donations anytime from around the US and the world on our website.

Info Cards About HIDS, TRAPS, FMF, DIRA, CANDLE Syndrome
Coming Soon!
CAPS Cards Are Currently Available 

We can send out the new CAPS info cards (wallet size) and CAPS medical guidebooks to you now. Info cards about other autoinflammatory diseases will be available in the next few months. We will post info in the next newsletter when these are complete.
Email karen.nomidalliance.org@gmail.com with your name, address, and phone number if you are interested in wallet cards, and tell us what disease(s) you are interested in receiving. 






Printable PDF About the Text to Donate Fundraiser

Please feel free to read, print, email and share this one page PDF that is a full size document that talks about the Text to Donate Fundraiser. We need your help to spread the word to help us reach our fundraising goals. This matching gift fundraiser ends on Halloween night! Thanks.
Text the word "RARE" to 85944 to donate $10 to The NOMID Alliance, that will be matched by the EveryLife Foundation

 Sobi has filed an application for Kineret® (anakinra) 
with the FDA for NOMID

The NOMID Alliance has been advocating for patients as part of this effort for a several years.
No ruling has been made yet by the FDA.

STOCKHOLM, SWEDEN--(Marketwire -07/06/12)-

Sobi has filed an application for Kineret® (anakinra) for the indication of neonatal-onset multisystem inflammatory disease (NOMID) with the Federal Drug Administration (FDA) in the US. The filing is made under an Orphan Drug Designation for the indication cryopyrin associated periodic syndromes (CAPS), which was granted in 2010. If the application is granted priority review, Sobi expects a review period of 6-8 months....

"The awareness and understanding of NOMID has increased significantly in the last couple of years", said Mrs. Karen Durrant, President of The NOMID Alliance -- a non-profit organization for patients with CAPS and other autoinflammatory diseases. "However, there is still an unmet medical need for these severely ill patients and an FDA approved therapy for this drug would greatly facilitate access to reimbursed medication."  

To read the rest of the press release, go to this link 

Recent Recognition for The NOMID Alliance 

Karen Durrant, RN --President & Founder of The NOMID Alliance was pleased to be honored as a nominee for the R.A.R.E. Champion of Hope Award for Medical Care and Treatment at the first annual R.A.R.E Project "Tribute to Champions of Hope" Benefit on September 27, 2012 in Long Beach, CA.

Thanks to all that nominated Karen, and to the R.A.R.E Project for this recognition. Congratulations to all the 2012 Champions of Hope! Read more about this, and the R.A.R.E Project at this link.

Thanks So Much Oisten Family!

A special thanks to Olivia Johnson, Peighton Isley, Morgan Oisten, Henley Romine and their families for their amazing and inspirational fundraiser on Friday in Westfield, IN! Thanks so much to the Oisten family for choosing to support The NOMID Alliance and increase awareness about these diseases with this fun event, which included a scavenger hunt, run/walk, and a barbecue pork sandwich dinner provided to all participants by Stuart’s Steakhouse.

We cannot thank you enough! Read more about their efforts in this news story.

Autoinflammatory
Disease 2013 Picnics

The NOMID Alliance will be sending out news and plans about 2013 nationwide patient and family picnics in the next newsletter. 

Stay tuned for more details! Follow us on Facebook or Twitter for the latest updates. Thank you.

PDF Brochure About Autoinflammatory Diseases
& What The NOMID Alliance Does For Patients

Here is our informative 2 page pdf brochure that introduces people to autoinflammatory diseases, the mission, purpose, and goals of The NOMID Alliance. We are happy to mail copies to you, or you can print them out on your own (2-sided printing recommended).
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