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NIH-WRNMMC 2nd Symposium on Autoinflammatory & Immunedysregulatory Diseases

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National Institutes of Health (NIH)

10 Center Drive

Bldg 10 Lipsett Auditorium

Bethesda, MD 20814

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We would like to invite you to participate in the 2nd NIH-WRNMMC Symposium on Autoinflammatory and Immunedysregulatory Diseases on Thursday, August 22nd from 8 am until 5 pm, and Friday August 23rd from 8 am until 6 pm.

The symposium will be in the Lipsett auditorium in Building 10 on the main NIH campus in Bethesda Maryland. Please register for each session date that you want to attend. ADMISSION IS FREE!

When you click "register" to choose a date, note that both days will appear in the next screen on the registration-you can reserve space for both days and they are separate tickets for each day, for our security list.

The main goals of the symposium are:

  1. Building a Trans-American Network for autoinflammation and immune dysregulation that can interface with existing groups.
  2. Morning scientific sessions presenting new research, and a special Grand Rounds on Friday morning with cases presented that feature autoinflammation & immunedysregulation.
  3. Education for medical professionals interested in learning more about autoinflammatory diseases, and how to diagnose, care and treat patients. There will be an afternoon session that will have an "autoinflammatory boot camp" set of sessions for training doctors.

Admission is free to attend the conference, but registration is required. All attendees that are non-NIH based need to have a ticket reserved. Arrive early at the NIH to clear security, and pick up your name tag before the sessions start at 8 am.

Attendees will be responsible to buying their own lunch at the NIH Building 10 Food Court on the B1 level, that has a lot of delicious options; or in the cafeteria on the 2nd floor, or other areas on the NIH Campus.

The full agenda will be released later and emailed to all that register. Invited speakers include:
Dr Daniel Kastner, Dr Raphaela Goldbach-Mansky, Dr Hal Hoffman, Dr Steven Holland, Dr Steven Groft, Dr Ivona Aksentijevich, Dr Anna Simon, Dr Polly Ferguson, Dr Adeline Vanderver, Dr Ivona Aksentijevich, Dr Kalpana Manthiram, Dr Erkan Demirkaya, Dr Ronald Laxer, Dr Helen Lachmann, Dr Seza Ozen, Dr Alexi Grom, Dr Amanda Ombrello, Dr Fabrizio de Benedetti, Dr Scott Canna, Dr Yasmine Belkaid, Dr Gigi Notarangelo, Dr Mariana Kaplan, Dr Luigi Notarangelo, Dr Virginia Pascual, Dr Sergio Rosenzweig, Dr Carlos Rose, Dr Sudhir Gupta, Dr Jessica Gill and many more!

Topics for the scientific sessions include:
Inflammasome-mediated diseases and regulating kinases, neutrophils, NETS and autoinflammation, epigenetics and autoinflammation, microbiome and immune dysregulation,
non-coding RNAs and regulation of intracellular sensors, transcriptomics and clinical implementation, plus, gene editing and bone marrow transplantation in rare Iimmunedysregulatory diseases and autoinflammatory diseases, and more.

The training session track includes talks on:

  • Boot camp Genetics (how to order and how to interpret genetic data)
  • Boot Camp: Biomarkers in Autoinflammation
  • NIAID Grand Rounds (Friday morning) with a focus on autoinflammation & immune dysregulation cases
  • Autoinflammatory diseases for the Adult including Schnitzler’s and adult-onset CAPS
  • Treatment of patients without mutations (PFAPA & other periodic fever syndromes and difficult MKD/HIDS)
  • Autoinflammatory Interferonopathies (Diagnosis and Treatment-CANDLE, SAVI, AGS and others)
  • The Spectrum of Still’s disease
  • Diagnosis and Treatment of the undifferentiated (unclassified autoinflammatory patient)
  • Problems in treating patients with IL-1 mediated diseases
  • Transition to the adult service, and challenges
  • Treatment approach to granulomatous diseases
  • Diagnosis and treatment of DADA2 and CRMO
  • HA20 (TNFAIP3) and Behçet’s-like diseases
  • HLH vs. MAS, and treatment considerations
  • More topics to be announced later!

The official hotel is the Hyatt Regency Bethesda, which is right at the Bethesda Metro Station (Red Line), that is one stop away from the NIH (Medical Center Red Line.)

We have a large block of hotel rooms that you can reserve before July 26th here on the Hyatt Regency Bethesda site for this conference.

On Saturday there will be a special patient and caregiver program, lunch and activities on Saturday, August 24, 2019 at the Jane Lawton Community Center in Bethesda, MD near the Bethesda Metro Station, and near the Hyatt Regency Bethesda Hotel. To register for the patient and family day, click here.

In addition, there is a concurrent working group of around 80 experts from North and South America and the rest of the world meeting to develop care and treatment guidelines (that will be published), and address unmet needs for four main categories of autoinflammatory diseases, including:

  • IL-1 mediated diseases (TRAPS, CAPS (NLRP3-AID), and MKD/HIDS) (working group 1)
  • Type I IFN-mediated autoinflammatory diseases (SAVI, CANDLE, AGS and others (working group 2)
  • Macrophage activation syndrome (MAS)/hemophagocytic lymphohistiocytosis (HLH), SJIA/Stills, NLRC4 and other MAS affected diseases (working group 3)
  • Selected other autoinflammatory diseases (DADA2, CRMO, Blau & granulomatous diseases) (working group 4).

The working group sessions are invitation-only, and reservations have been pre-arranged for those speakers.

The Autoinflammatory Alliance is a co-sponsor and funder for this symposium with the NIH NHGRI and NIAID, WRNMMC and also the SJIA Foundation is collaborating and financially supporting this symposium.

The Autoinflammatory Alliance can accept donations from the general public to support our efforts for this symposium, to cover our share of the event costs, but the Autoinflammatory Alliance alone is asking for your support and donations-not the HHS, NIH, NHGRI, NIAID or WRNMMC.

The HHS, NIH, NRGRI, NIAID or WRNMMC or any other insititute does NOT endorse any fundraising activities in connection with the event. Any gift or donation will go solely toward defraying the expenses of the Autoinflammatory Alliance, not HHS, NIH, NHGRI, NIAID, WRNMMC or any other institute.

Please consider making a donation to show your support for the Autoinflammatory Alliance to support our efforts to for this symposium with your eventbrite registration, or via our Mightycause online fundraising platform.

FAQs

ARRIVE EARLY to clear security every morning. More information on badges for the event, and security will be provided in early August to all registered attendees.

Are there ID or minimum age requirements to enter the event?

Per the NIH Visitor Website Campus and Security Page: "Visitors will be required to show one (1) form of identification (a government-issued photo ID-driver's license, passport, green card, etc.) and to state the purpose of their visit.

All visitors must enter through the NIH Gateway Center. You will be asked to submit to a vehicle or personal inspection. Visitors over 15 years of age must provide a form of government-issued ID such as a driver's license or passport. Visitors under 16 years of age must be accompanied by an adult

The NIH Gateway Center is located adjacent to the Medical Center Metro Station at the South Drive entrance to campus from Rockville Pike / Wisconsin Avenue (Route 355). It combines visitor parking, non-commercial vehicle inspection and visitor ID processing, all in one location. The NIH will process all visitors in vehicles or as pedestrians.

Patients and patient visitors should continue to enter campus at the West Drive/Cedar Lane entrance during the hours of 6am–10pm, 7 days a week."

"The REAL ID Act prohibits federal agencies from accepting for official purposes driver’s licenses and identification cards issued by states that do not meet the law’s standards for secure issuance and production. While American Samoa, Illinois, Minnesota, Missouri, New Mexico, and Washington currently do not comply and do not have an extension from DHS, the NIH is currently accepting driver’s licenses from these states and territory. This may change based on the Office of General Council’s (OGC) interpretation of the law.

On October 13, 2015, DHS implemented Phase 3 of the Act, which applies the REAL ID act to all federal facilities “except those providing healthcare, federally protected benefits and participation in law enforcement functions.” The current NIH policy is to accept all driver’s licenses so that patients, invited speakers, and medical students are not turned away."

For additional information about the Real ID Act, please visit: http://www.dhs.gov/secure-drivers-licenses(link is external).

What are my transportation/parking options for getting to and from the event?

The NIH is located at the Metro Red Line MEDICAL CENTER stop, and the NIH Gateway Center (see above) is right next to the escalators that bring people to the street level at the NIH Medical Center Metro Stop.

The official hotel is the Hyatt Regency Bethesda, which is right at the Bethesda Metro Station (Red Line), that is one stop away from the NIH (Medical Center Red Line.) So, it is very easy to get to and from the hotel, and the NIH via the Metro Red Line. We have a large block of hotel rooms that you can reserve before July 26th here on the Hyatt Regency Bethesda site for this conference.

For more information, or for those that will be driving, please visit the Getting to the NIH page of the NIH site.

What can I bring into the event?

There is a security x-ray for all bags that you may bring to the NIH campus Gateway Center. You can bring a water bottle (empty for the security checkpoint, notepad, laptops, phones, and other electronic devices, food, personal use medication, etc and whatever is needed for you to manage for the day. Some auditoriums may be cold, so bring a light sweater or jacket to be comfortable, and you can bring your purse or other small bag with you.

All visitors must enter through the NIH Gateway Center. You will be asked to submit to a vehicle or personal inspection. Visitors over 15 years of age must provide a form of government-issued ID such as a driver's license or passport. Visitors under 16 years of age must be accompanied by an adult.

Please be aware: Federal law prohibits the following items on Federal property: firearms, explosives, archery equipment, dangerous weapons, knives with blades over 2½ inches, alcoholic beverages, open containers of alcohol and marijuana (cannabis).

Please refer to the NIH Visitors Website for any questions about visiting the NIH, security, parking, maps, metro information or any other details.

How can I contact the organizer with any questions?

Email Karen Durrant, RN-President of the Autoinflammatory Alliance with questions.

karen@autoinflammatory.org or you can call 1-415-831-8782 (office number-not a cell.) We will have contact info for registered attendees that may have needs shared with registered attendees in an email closer to the event date.

Do I have to bring my printed ticket to the event?

Please register, and have your ticket printed, or on your phone to be admitted to all events.

Can I update my registration information?

Yes!

Is my registration fee or ticket transferrable?

The registration is free, and each person needs to have a registration ticket with their name and contact information on it. You can edit and change your registration before the event, but we need your correct info on your registration in place by August 18, 2019.

Is it ok if the name on my ticket or registration doesn't match the person who attends?

NO. See above information.

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Date and Time

Location

National Institutes of Health (NIH)

10 Center Drive

Bldg 10 Lipsett Auditorium

Bethesda, MD 20814

View Map

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