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February Rare Disease Day Edition: NOMID Alliance Advocacy & Awareness Efforts
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Autoinflammatory Disease

Awareness, Advocacy & Research


Please Read to the Bottom-Lots of Breaking News!

We promise to get back to quarterly newsletters again, so they will not be so big.

Today is Rare Disease Day!

This year's Rare Disease Day Theme is:  Joining Together for Better Care.  Here is the official video for Rare Disease Day. Please take a look at the US Rare Disease Day website and the World Rare Disease Day site for more information on what is being done for the day.

Here is how The NOMID Alliance has been involved in Rare Disease Day 2014:

Rare Disease Legislative Associates (RDLA) have had a number of events this week, including the RDLA Legislative Conference and Lobby Days in Washington DC.  Two of our NOMID Alliance board members and advocates–Carla Herbert and Julie Cunningham represented patients with autoinflammatory diseases, and our org at the RDLA events this week, and were able to meet and work with many other rare disease organizations, and get the needs of our patients to legislators and policy makers in the US government.  We prepared a one page letter to share our message to the elected officials.

In addition, Julie Cunningham was the co-chair for the Global Genes World Rare Disease Day effort this year, and she did a great job. In addition to that, and the RDLA events in Washington DC, she also held a rare disease awareness event at Alverno High School in Pasadena, CA. They did a great job telling the students all about the "Wear that You Care" campaign and handing out denim ribbons.  Julie and her family also filmed with her daughters for an news story on rare diseases for Fox 5 News in San Diego that aired on Rare Disease Day and featured their experience with CAPS, and also included Dr Hoffman, who is on The NOMID Alliance Medical Advisory Committee.
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Carla Herbert has been involved in planning the  New Jersey State House Event  that will be held on Monday,  March 3, from Noon To 1 P.M, followed by Luncheon. Peter, Carla's son will also be speaking about living with a rare disease. Thank you Carla and Peter for your awareness efforts! Event Address: Committee Room 4 – Annex Building New Jersey State House, 125 West State Street, Trenton, New Jersey Organized By: Rare New Jersey Contact: rdd-us@rarediseases.org

Colleen Paduani, board member and advocate presented at a special Rare Disease Day Lunch & Learn event hosted by Rabobank in New York City at their headquarters, along with a speaker from NORD. Rabobank also made a very generous donation to both organizations today! Thank you for the donation, Rabobank, and to International Desk Manager Andre Hessels and IT's Michel Angevare for organizing this awareness campaign within RI-NAW. Thank you Colleen Paduani, NOMID Alliance board member and advocate for presenting at this lovely event today.

Employees who chose to make a donation, and attend the Lunch n' Learn today received a boxed lunch, bracelet and pin, and heard two guest speakers with rare diseases in their families explain how their lives have changed with this campaign's support. https://www.rabobankamerica.com/


 

New Jersey State House Event
Date: March 3, from Noon To 1 P.M, Followed by Luncheon.

Event Address: Committee Room 4 – Annex Building
New Jersey State House, 125 West State Street, Trenton, New Jersey
Organized By: Rare New Jersey
Contact: rdd-us@rarediseases.org

Please join Rare New Jersey for an hour of learning and discussion in honor of Rare Disease Day, a global, annual event that draws attention to rare diseases as an important public health issue that cannot be ignored. Patients and advocates who support them will be speaking about the issues across the life cycle. From diagnosis to the search for treatments and specialists, from newborn screening to affordability of care, rare disease patients face myriad obstacles in their quest for good health care and access to school, work, and housing. Learn about all this and more from patients, legislators, experts, and patient advocates. With the enactment of the Affordable Care Act, and the new heightened role states play in the lives of patients, this topic and discussion are extremely timely and important.

Please join us for lunch immediately following our event at the Lafayette Yard Hotel. You’ll meet other members of the rare disease community and the people who support them. Space is limited, so please RSVP to Shari Ungerleider at shariunger@yahoo.com by February 24, 2014 and let her know how many are in your party.

This event is sponsored by the National Organization for Rare Disorders (NORD) and organized by Rare New Jersey, a working group of patient and patient advocates working together to improve the lives of rare disease patients in New Jersey.

- See more at: http://rarediseaseday.us/events/events/#NewJersey

New Jersey State House Event
Date: March 3, from Noon To 1 P.M, Followed by Luncheon.

Event Address: Committee Room 4 – Annex Building
New Jersey State House, 125 West State Street, Trenton, New Jersey
Organized By: Rare New Jersey
Contact: rdd-us@rarediseases.org

Please join Rare New Jersey for an hour of learning and discussion in honor of Rare Disease Day, a global, annual event that draws attention to rare diseases as an important public health issue that cannot be ignored. Patients and advocates who support them will be speaking about the issues across the life cycle. From diagnosis to the search for treatments and specialists, from newborn screening to affordability of care, rare disease patients face myriad obstacles in their quest for good health care and access to school, work, and housing. Learn about all this and more from patients, legislators, experts, and patient advocates. With the enactment of the Affordable Care Act, and the new heightened role states play in the lives of patients, this topic and discussion are extremely timely and important.

Please join us for lunch immediately following our event at the Lafayette Yard Hotel. You’ll meet other members of the rare disease community and the people who support them. Space is limited, so please RSVP to Shari Ungerleider at shariunger@yahoo.com by February 24, 2014 and let her know how many are in your party.

This event is sponsored by the National Organization for Rare Disorders (NORD) and organized by Rare New Jersey, a working group of patient and patient advocates working together to improve the lives of rare disease patients in New Jersey.

- See more at: http://rarediseaseday.us/events/events/#NewJersey

New Jersey State House Event
Date: March 3, from Noon To 1 P.M, Followed by Luncheon.

Event Address: Committee Room 4 – Annex Building
New Jersey State House, 125 West State Street, Trenton, New Jersey
Organized By: Rare New Jersey
Contact: rdd-us@rarediseases.org

Please join Rare New Jersey for an hour of learning and discussion in honor of Rare Disease Day, a global, annual event that draws attention to rare diseases as an important public health issue that cannot be ignored. Patients and advocates who support them will be speaking about the issues across the life cycle. From diagnosis to the search for treatments and specialists, from newborn screening to affordability of care, rare disease patients face myriad obstacles in their quest for good health care and access to school, work, and housing. Learn about all this and more from patients, legislators, experts, and patient advocates. With the enactment of the Affordable Care Act, and the new heightened role states play in the lives of patients, this topic and discussion are extremely timely and important.

Please join us for lunch immediately following our event at the Lafayette Yard Hotel. You’ll meet other members of the rare disease community and the people who support them. Space is limited, so please RSVP to Shari Ungerleider at shariunger@yahoo.com by February 24, 2014 and let her know how many are in your party.

This event is sponsored by the National Organization for Rare Disorders (NORD) and organized by Rare New Jersey, a working group of patient and patient advocates working together to improve the lives of rare disease patients in New Jersey.

- See more at: http://rarediseaseday.us/events/events/#NewJersey

New Jersey State House Event
Date: March 3, from Noon To 1 P.M, Followed by Luncheon.

Event Address: Committee Room 4 – Annex Building
New Jersey State House, 125 West State Street, Trenton, New Jersey
Organized By: Rare New Jersey
Contact: rdd-us@rarediseases.org

Please join Rare New Jersey for an hour of learning and discussion in honor of Rare Disease Day, a global, annual event that draws attention to rare diseases as an important public health issue that cannot be ignored. Patients and advocates who support them will be speaking about the issues across the life cycle. From diagnosis to the search for treatments and specialists, from newborn screening to affordability of care, rare disease patients face myriad obstacles in their quest for good health care and access to school, work, and housing. Learn about all this and more from patients, legislators, experts, and patient advocates. With the enactment of the Affordable Care Act, and the new heightened role states play in the lives of patients, this topic and discussion are extremely timely and important.

Please join us for lunch immediately following our event at the Lafayette Yard Hotel. You’ll meet other members of the rare disease community and the people who support them. Space is limited, so please RSVP to Shari Ungerleider at shariunger@yahoo.com by February 24, 2014 and let her know how many are in your party.

This event is sponsored by the National Organization for Rare Disorders (NORD) and organized by Rare New Jersey, a working group of patient and patient advocates working together to improve the lives of rare disease patients in New Jersey.

- See more at: http://rarediseaseday.us/events/events/#NewJersey

NOMID Alliance Outreach & Awareness

We have a number of upcoming opportunities to get more awareness about autoinflammatory diseases to medical professionals, and others.  Our Comparative Chart of Autoinflammatory Diseases was first presented during the scientific poster sessions on May 25th, 2013 at the 7th Congress of International Society of Systemic Auto-Inflammatory Diseases (ISSAID) in Lausanne, Switzerland. We brought hundreds of copies to share with doctors and ran out of them!

In October 2013, we distributed the expanded version of the chart at the American College of Rheumatology (ACR) Annual Meeting in San Diego, CA where we gave out thousands of charts to medical professionals from around the world, which has led to a great increase in new diagnoses and requests for more information from many doctors and patients.  The full chart is large, but available for viewing anytime on our website. If you are interested in a printed copy, please email us at: karen.nomidalliance.org@gmail.com
Left to right: Karen Durrant-President, Colleen Paduani & Jennifer Tousseau, board members & advocates

We had a nice dinner in the evening at the Rockin' Baja after the ACR meeting to thank the doctors that have helped our org and have worked with us for these printed materials, and also our donors that have supported these projects with grants, private donations, and fundraisers.  It was a fun evening, and one of the doctors said, "No one has ever done anything like this to thank us ever before."  We are so glad that we could do this for them this year, and want to say "thanks a milion" to all that support our org! 

On March 19th 2014 Colleen Paduani will be sharing our charts and new materials at the NYU 5th Annual Pediatric Rheumatology: An Update for Clinicians .

April 3-6th The NOMID Alliance was chosen as one a few exhibitors at The ACR Pediatric Rheumatology Symposium (PRSYM) in Orlando, FL. Karen Durrant- President (Executive Director) of The NOMID Alliance will be managing the display and presentation of materials, and may also attend CARRA's meeting earlier that week. 

We are working on how to make the chart into a more interactive, multi-lingual and easier to use chart online, and have a number of wonderful doctors from around the world that are willing to translate and help on this project, so it can reach more people in their native language.  It is a daunting, but much needed project that we will be working on for the rest of the year.

Autoinflammatory Diseases Info Cards are Available.
 

We have the info cards about other autoinflammatory diseases available in the next few months.   The featuresd diseases include: CAPS, TRAPS. FMF, HIDS, PFAPA, Blau, CANDLE, DIRA, and CRMO. We may feature other diseases soon.  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.


Coming Soon!

Autoinflammatory Diseases-Coming Together 2014 Patient Picnics are going to happen this summer!  Please visit our facebook events page to show your interest so we can start planning, but we will have a proper sign up and confirmed dates soon.  We are planning for mid-late June or mid-late July picnics in various parts of the US. Sites with coordinators are: Northern California, Southern California, Chicago,IL area, New York/New Jersey area, Alabama, and possibly Boston, MA (if we have a committed person or two to help coordinate for that area, and enough interest.)  Food and location, and activities will be provided by our org for all locations.  

In additon, we have a new blog that will be launched in early March at http://saidsupport.org to discuss all things involving awareness, advocacy, care and thriving with Systemic Autoinflammatory Diseases (SAID.)  Jennifer Tousseau, board member, advocate and a lead moderator on our private autoinflammatory facebook community has been working hard to develop this, and we are very excited to be able to share it soon! (We also have a CAPS community too).  The picture below is the header image.
 

Our long-awaited, and greatly needed injection tips book called "Healthier Ever After" that features ways to help children of all ages deal with injectable medications to treat their autoinflammatory (or any) disease is going to be printed next month! This can be adapted for the child's needs, and is based on a the following example of questions that help families to guide their plan for the injections.  The cover and injection tips planning page are shown. This book includes a dry erase chart (not shown) for planning goals and rewards for good behavior, and reusable vinyl cling stickers to put on the chart to record progress.  We will let everyone know when this will be available for families soon. This book was researched and written by a number of our board members, and also based on from feedback from our patient communities. A special thanks to Sobi US for an ediucational grant to have this book developed with thecementbloc. They did a great job!

Advocacy Spotlight

Dorelia Rivera, another board member and advocate celebrated her birthday, and used her special day to raise awareness for autoinflammatory diseases, Rare Disease Day and fundraised for The NOMID Alliance last weekend in Chicago.  We are so thankful for her dedication and support! 

In August, Dori (pictured below in the black shirt) met with Secretary of Health and Human Services Kathleen Sebelius, along with Dr Francis Collins, Director of the National Institutes of Health (NIH), MS Kathy Russell the CEO of the Children's Inn at the NIH, and Dr Goldbach-Mansky, who is an expert on autoinflammatory diseases, and US Federal Liaison to The NOMID Alliance.  Dorelia met with them, along with her family while she was at the Children's Inn (pictured) at the National Institutes of Health (NIH) to increase awareness about the challenges and experiences of autoinflammatory diseases.  It was a very helpful awareness meeting, and we are thankful that Dori could get the word out to the top official in the US overseeing health care!  Thanks again Dori for all that you do.

We want to thank all our board members, medical advisors, supporters and our patient community for all that they do to help us spread awareness and help patients with autoinflammatory diseases.  This is just a sampling of the many efforts that go on throughout the year, but we wanted to feature what is going on for Rare Disease Day.


Same Mission & Goals, but a New Name and Logo

Last, but not least, we are in the final process of a name change for our org, but our goals remain the same as when we started in 2006 that we are dedicated to improving awareness, care and treatment for patients with Cryopyrin-Associated Periodic Syndromes (CAPS) and other autoinflammatory diseases. 

We have wanted to do this since 2009, but finally are taking it on, and it has been a big project.  What's in a Name?  Well, this new name makes our founding mission clearer to anyone unfamiliar with our work.  Also, the logo features an inflammasome, which is a main part of the innate immune system that forms in cells that leads to inflammation for a lot of autoinflammatory diseases.  Our next newsletter will highlight this change, and also the blog. The new logo is below, but you will still be able to reach us through the same website, but it will be routed to autoinflammatory.org very soon. Thanks Nate Durrant-Secretary/Treasurer, board member and Art Director for all your pro-bono work on this new identity.

Our Patient Resources Area on our Website

Visit Patient Resources area in the "Connect" section of our website If you are looking for a rheumatologist, genetic testing, FDA med watch, clinical trials, want to connect with other patients, need information about 504 programs, the NIH staff directory, NIH patient shuttles, or many other things, go to this area of our website.
 

Wanting to Connect With Others that Have Autoinflammatory Diseases?

Visit our  Links page in the "Connect" section of our website to find links to many online patient groups that are listed by disease, so make sure to scroll down the entire page to see them all!  This include links to RareConnect and our private facebook patient groups for CAPS and our private group for anyone with an autoinflammatory disease (incuding the undiagnosed) at this link.  Please contact us if you have a suggested group to add to the list, or other resources.  We are in the process of updating our website. Thank you!


 

 

A Special Thanks to All our Donors and Fundraisers!
There are so many of you to thank for your support, grants, fundraisers, and donations that I hope that you all can visit our Donors area on our website, that was updated at the end of 2013.  We will be updating for 2014 soon.  We could not do any of this without your support.
 

Autoinflammatory Disease Patients in the News

Global Connection Interview: Our Child has a Rare Disease (CAPS)

The Alternative Press article about Mountain Park School in NJ Participating in Rare Disease Day

BBC: An amazing story about a patient blinded by Behçets Disease that is  doing unique tactile photography

Belgian CAPS patient is having to fundraise to try to pay for their medications
 

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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