Read our past newsletters to hear more about our advocacy and events. Thanks! |
Upcoming Symposium 1st Symposium on Autoinflammatory & Immune-Dysregulatory Diseases on Monday, Sept 19th at Walter Reed NMMC, Bethesda, MD
This video below features highlights from our patient picnics this summer, and our friends at The CementBloc created it for us pro-bono, in addition to making logo and identity for the picnics, banners, bean bag toss games, flyers and more to make this a wonderful picnic. Many sponsors supported the picnics, which will be featured on our donors page.
Photos from our 2014 Autoinflammatory Picnic Days this summer are on this
flikr autoinflammatory group page. Picnics were held in Metro NY area, Ohio, Northern & Southern California.
Visit our new blog at saidsupport.org for more details about our efforts and recent activities, such as Rare Disease Day 2014, advocacy and outreach to increase awareness
Rare Disease Day - February 29, 2012
The NOMID Alliance is proud to be a partner of Rare Disease Day. We are involved in a number of legislative efforts for Rare Disease Day, to increase support for research and legislation for rare diseases. In addition, two of our board members have been involved in getting their Congressmen to join the Rare Disease Caucus, and support rare disease legislation. We will have more details on this effort soon. The NOMID Alliance is also hosting an event in San Francisco on Saturday, February 25, 2012 for Rare Diseases at Ocean Beach.
More information is at this link:
Rare Diseases "Coming Together" Beach Bonfire/Marshmallow Roast
J.R., a teen with CAPS from Nebraska was successful in 2011, and also in 2010 with her efforts to have the Governor of Nebraska issue an official proclamation in honor of The NOMID Alliance to recognize Rare Disease Day in the State of Nebraska! Thanks to all that wrote to their governors to get proclamations in their states, including A.R. in Arkansas. Rare Disease Day was recognized in all states in 2011, and officially recognized by Congress this year too.
Dorelia R., one of our board members and Michele M, a parent attended the Rare Disease Day media event and rally in Chicago very early on a cold winter morning for Rare Disease Day 2011 on February 28th. Thanks for supporting rare diseases, and representing The NOMID Alliance! We really appreciate it.
NOMID Alliance was at the Pediatric Rheumatology Update
March 23, 2011 in NYC
The NOMID Alliance were exhibitors at the March 23, 2011 Pediatric Rheumatology Update at NYU in New York City. Colleen Paduani represented us well, and there were many excellent presentations, including one by Dr Goldbach-Mansky.
The NOMID Alliance was a presenting organization at
the Autoinflammation 2010 Patients Program
Colleen Paduani did a great job representing The NOMID Alliance at Autoinflammation 2010 in Amsterdam, the Netherlands and also gave a wonderful presentation at the concurrent Patient's program. She was able to meet many other organizations from all over Europe that help patients with autoinflammatory diseases. She met many of the doctors that care for people with these diseases, and patients that had come to the program to learn more about these rare diseases, and meet others like them.
A Walk in the Park - Hope for Quinn
This benefit for the NOMID Alliance on July 25, 2009 in Newburgh, NY was a great success and we thank all that participated and supported the cause.
CAPS Brochure and Scientific Poster was presented at the FMFSAID 2008 Congress in Rome.
The CAPS brochure was distributed to doctors from around the world at the FMFSAID 2008 Congress in Rome, Italy April 4-8, 2008. A special thanks to Dorelia Rivera, one of our board members, that attended the congress to promote the program, distribute CAPS brochures and present a scientific poster. For more information about this event, go to www.fmfsaid2008.com.
Deep and sincere thanks to Dr. Martini and the organizers and scientific secretariat of the FMFSAID congress for facilitating this opportunity and admission to this great congress.
The NOMID Alliance was at the 2008 American College of Rheumatology Conference
The NOMID Alliance was present in the exhibition hall at booth #1544 at the 2008
American College of Rheumatology Conference in San Francisco, California October 26-29th. We distributed the CAPS brochure to increase awareness of NOMID, MWS and FCAS amongst thousands of rheumatologists at this important conference. We met many doctors that have CAPS patients, and even more that had never heard about these syndromes until they visited our booth! Thanks to all that visited our booth. The NOMID Alliance appreciated the non-profit rate booth that was offered to us by the American College of Rheumatology and the organizers, Slack Inc. Thanks so much!
Earnhart & Friends "Evening of Art" Benefiting the NOMID Alliance - November 11, 2008
This event in Bowling Green, Kentucky was a wonderful success! Thanks for all your support. The Advertising Agency, Earnhart + Friends, was gracious enough to host this exciting fundraising event! All proceeds benefited THE NOMID Alliance.