SJIA Conf 2019 Patient Registration

SJIA Family Conference: Family Registration

June 27th - 29th, 2019. Cincinnati Childrens Hospital, Cincinnati, Ohio.
Patients / Families should use this registration form. There will be a separate registration form for Doctors / Researchers, and Sponsors / Exhibitors.

Last date for free registration is June 1st, 2019. After that, there is fee of $50 per adult & $25 per child.

More information about conference is at: www.systemicjia.org/conference
Registration Type*
Full Name*

First NameLast Name
E-mail*
Address*

Street Address

Street Address Line 2

CityState

Zip CodeCountry
Phone Number*

Area CodePhone Number
Will this be your first time at SJIA Family Conference?

Yes, this will be first timeNo, I have attended previously
Parts of Conference you will attend
Tentative Conference Schedule

JUNE 27th, THURSDAY (Pre-Conference)
- Morning: Zoo visit with SJIA Families
JUNE 28th, FRIDAY (Pre-Conference)
- Afternoon: Group Discussion for families w/ Lung disease (by Invitation)
- Afternoon: Registration & Networking with SJIA Families
- Evening: SJIA Foundation Reception
JUNE 29th, SATURDAY (Main Conference Program)
- All Day: SJIA Conference Program
What parts of conference will you attend?*

Thursday morn Zoo visitFriday afternoon / evening programSaturday conference programOther
SJIA / Still's Patient Information

(Understanding who is attending helps us keep program relevant)
Name of the SJIA / Still's patient*

First NameLast Name
Date of Birth*

MonthDayYear
Date
Gender*
How many years since patient was diagnosed with SJIA / Still's*
Which of these complications has patient had?

Recurrent MAS (Macrophage Activation Syndrome)Persistent ArthritisHeart ComplicationsLung ComplicationsLiver / Kidney ComplicationsGrowth RetardationCNS / Brain complicationsGut / stomach complicationsOther
Describe complications in a few lines
describe complications above
Has patient been diagnosed with (or suspected of) LUNG DISEASE. Describe diagnosis & symptoms.
describe lung complications above
How would you describe patient's current status with SJIA / Still's?*

Under control WITH medicationsUnder control WITHOUT medicationsNOT under control (has active disease / complications)
Second Opinion Appointments

For families with uncontrolled disease, repeated MAS or significant organ complications, and/or lung disease, the Systemic JIA Foundation can help coordinate a Second Opinion Appointment with the Rheumatology Department at Cincinnati Childrens Hospital. Many patients have availed of this opportunity in previous years. How it works: Check the appointment option below. Tell us exactly why you need the appointment, and we will share your request with the Rheumatology department who will then reach out to you.
Do you want to request a Second Opinion Appointment?*

Yes (need a FOLLOWUP appointment)Yes (need a FIRST TIME appointment)No, don't need appointment
If you are requesting an appointment, what is the main reason for the consult? Check all that apply.

Questions regarding DIAGNOSIS of SJIAQuestions regarding best TREATMENT of SJIATreatment of repeated episodes of MASDiagnosis / treatment of LUNG DISEASEOther
Help Cure SJIA by participating in Research!
SJIA Research is absolutely essential to improving the lives of our children as we work toward an eventual cure. Additionally, Cincinnati Children's is one of the few hospitals in the world that can run SJIA specific labs like IL18, S100 & CXCL9. These labs can be shared with your primary rheumatologist at your request so they can better understand your child's disease.

Repeat research participation is helpful, and encouraged! If you have participated in prior research at Cincinnati Children's, please do so again.
Did patient participate in research study to help CURE SJIA last year?*

Yes!No
Will patient be participating in research study to Cure SJIA this year?*

Yes!No
Will FAMILY be participating in research study this year? (families who participated last year should choose "No")*

Yes!No
Tell us who is attending conference
Please note: Due to the overwhelming response to the conference, we have run out of room in our childcare. Childcare is now available only for SJIA patients. We regret that childcare can no longer accommodate any new sibling registrations (who register after April 28th, 2019).
How many from your family are attending conference?*
How many are ADULTS?*
How many kids (2-13 years) in your family?*
Due to overwhelming response, our childcare slots are full. Regretfully, from April 28th onwards, we can only offer childcare for the SJIA patient. Please make your own arrangements for other kids.
How many older kids (14 or older) in your family?*
Due to overwhelming response, our childcare slots are full. Regretfully, from April 28th onwards, we can only offer childcare for the SJIA patient. Please make your own arrangements for other kids.
Childcare Arrangements: Please note, our sitters are not medically trained /equipped to take care of special needs. Currently we are planning childcare for the 2-13 age group.
If you have questions, email events@systemicjia.org.

Please note, you will receive an email with a followup Childcare Form (at the email address you provided above). The Childcare form needs to be completed by June 1st to reserve childcare. If you have not completed that by June 1st, your childcare booking will lapse.
Registration Fee / Policies
REGISTRATION IS FREE BUT YOUR DONATIONS HELP!

Registration is free so every SJIA family can attend.

But the conference costs a lot to organize (e.g., rent space, food & childcare). Your donations help make this conference happen.

Go to our Crowdrise page to donate / fundraise for the conference!

https://www.crowdrise.com/sjiafamilyconference
Registration Dates, Cancellation & Late Fees

*Last date for free registration is June 1st, 2019. For late registrations, there is a fee of $50 per adult, and $25 per child for registration.

*If your plans change, cancellation must be made by sending email to events@systemicjia.org by June 20th, 2019.

*Childcare requests for SJIA patients must be submitted (along with Childcare Form by June 1st, 2019). They cannot be changed after that date.
Hotel Information

The official conference hotel is the Hampton Inn & Suites, Cincinnati Uptown University Area, which is close to the Childrens’s Hospital.

Book by May 31st to take advantage of the conference rates of $119/night (which includes free breakfast & wifi). We plan to hold some social events at the hotel

Click this link to book hotel at conference rates.
Conference Responsility Clause

By signing the registration form, you agree to release the Systemic JIA Foundation from any injuries or property loss/damage incidents that may take place. If the Systemic JIA Foundation is unable to perform its obligation by any occurrence that is beyond its control, including, but without limitation to, an act of God, strike, terrorism or acts of war, weather conditions, or an act of a third party (such as a hotel or airline), you also agree that the Systemic JIA Foundation
will be excused from performance and will not be responsible for any expense, loss, damage or any other liability relating to such occurrence.

In consideration of the acceptance of this registration application, you also agree to release and hold the Systemic JIA Foundation harmless for any loss, claim, injury, accident, inconvenience or irregularity arising out of or relating to your participation in this event.

Audio & Visual Release

By signing this registration form, you give the Systemic JIA Foundation
permission to take and use your picture and/or videotape you, and to use your image for any purpose related to this conference / marketing the foundation.

Questions / Suggestions?
Please email events@systemicjia.org with any questions.
Your name*

First NameLast Name
Sign in box and click submit to register.*

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SJIA Family Conference: Family Registration

Parts of Conference you will attend

SJIA / Still's Patient Information

Second Opinion Appointments

Help Cure SJIA by participating in Research!

Tell us who is attending conference

Registration Fee / Policies