FAQ below
If you are a member of the press and would like media access please see our Press page.
WHO SHOULD ATTEND?
As awareness advocates we want the whole world to know what the rare disease community faces, but we realize this festival has a niche appeal. Perhaps the key audiences are the following:
Geneticists, Genetic Counselors, Researchers, Doctors, Nurses
With 7,000 rare diseases no Doctor can be expected to be familiar with all of them. And even if you are already up to date on the clinical science these films place that knowledge in the context of how families actually live while facing these disorders.
In many cases of rare disease early detection can make a huge difference in outcome.
Patient Families and Advocates
Often patients and their families feel quite isolated as they face life with a rare disease. These films not only educate us on other conditions which may or may not be similar to the one affected our loved ones, but they show how much all rare families have in common. Also breakthrough in one disorder can often translate into treatment for a different disorder. This makes it all the more important to connect with other patient populations and their advocates.
Gene Therapy and Bio Science industry professionals
Sometimes you just need a reminder of why you do what you do. These films put human faces on the work you may already be doing and might inspire you to new avenues of applying your research.
Here's one of our favorite stories of a researcher getting an “aha” moment from a rare patient's mom. He asked “If we could fix only one symptom for your son what would it be?” “I'd like him to be able to talk,” was her answer. He thought a while and said “You know in the lab mice we see muscle paralysis in the jaw. We might be able to prevent that.” The mom was over the moon at the possibility. A possibility that hadn't occurred to the researcher, after all he was focused on curing the syndrome not necessarily relieving symptoms.
Should young children attend?
They are certainly welcome. Our films rarely if ever use language or visuals that would be rated PG-13 or R, but almost all of our films address mortality and many of them discuss the premature deaths of children. If your children have already been exposed to that message and it does not overly upset them, bring them along.
We feel our Sunday 11/10/2019 7:30:00 slate “No Docs Allowed” is particularly suited to children as these non-documentary films have more fantasy, magic, charm, and hope than some other slates which can be more sober. However, the last two films of that slate have sexually suggestive (but not explicit) elements. An advisory card will precede those two films, offering a chance to exit with children if you like.
FAQ
BASICS
Q. When and where is the festival?
A. November 9 and 10, 2019, at Mission Bay Conference Center at UCSF, 1675 Owens St #251, San Francisco, CA 94158. (https://goo.gl/maps/LkofALarGbGEB4v26) For travel information, see "TRAVELING TO THE FESTIVAL," below.
Q. What is the schedule for the festival?
A. The full schedule is available here: https://www.rarediseasefilmfestival.com/schedule2019
We may add some screenings to those listed, depending on demand.
Q. Who are the festival's organizers?
A. Bo Bigelow and Daniel DeFabio, two fathers of children with rare diseases. You can find more information about us here:
https://www.rarediseasefilmfestival.com/who/
Q. How can I help spread the word about the festival?
A. We're on Facebook and Linkedin. Bo, one of our organizers, is on Twitter. Please share our posts and help us fill some seats! Or just tag us and tell us you're coming. We're using the hashtag #DISORDER.
https://www.facebook.com/rarediseasefilmfestival
https://www.linkedin.com/company/27114399
https://twitter.com/bobigelow
Q. Are there age limits or ID requirements to enter?
A. No. Many of our films deal with sensitive issues of illness, pain, life, and death, and a few have some adult language, so you should use your discretion in deciding whether to bring children.
Q. Are there any accommodations at the festival for rare-disease patients and families?
A. Yes. There are special spaces at each screening to accommodate wheelchairs. We are also offering significant discounts on our tickets to patients and families, so that each slate should cost no more than $6 per person.
Q. Is there space available for people in wheelchairs?
A. Yes, there are special spaces at each screening to accommodate wheelchairs.
Q. When are the breaks in the schedule for meals?
A. We don't offer food onsite, nor do we schedule time to grab a meal. Think of us as a movie theater--you can select the screenings you'd like to see before or after a time that works for you to get a meal elsewhere. But if you attempt to see every screening we offer, it will be a long (mostly uninterrupted) day.
Q. If I can't make it to the festival, is there any way to access the films online?
A. For some of our 2017 films, yes, and we've linked to them here: https://www.rarediseasefilmfestival.com/selection2017
Some 2019 films will be added to the list after November.
TICKETING
Q. How can I get tickets?
A. We're selling tickets starting on Thursday, September 12th, through Eventbrite. You can buy them on our website, Facebook, and LinkedIn.
https://www.rarediseasefilmfestival.com/attend2019
https://www.facebook.com/rarediseasefilmfestival
https://www.linkedin.com/company/27114399
Q. Where can I find my tickets after I order them?
A. We are selling tickets through Eventbrite. The fastest way to get your tickets is to find your order confirmation email. You can also check your Eventbrite account or the Eventbrite app. If you still can't find your tickets, contact us with the name on your order and your purchase date and ask us to resend your tickets:
https://www.rarediseasefilmfestival.com/contact
— Search for an email from orders@eventbrite.com
Your tickets should be available as a PDF attachment.
TIP: If you have more than one email address, you may have used a different email to place your order. Check the email account for each to find your order confirmation.
— Check your Eventbrite account
Computer (desktop/web):
1. Go to https://www.eventbrite.com/.
2. Enter the email address you used to register.
3. Click “Get started”.
4. Enter your password.
5. Find your order (under Tickets).
6. Click the event name.
7. Select "Print Tickets".
Mobile (iOS):
1. Download the Eventbrite App.
2. Open the app on your device.
3. Enter the email address you used to register.
4. Enter your password.
5. Tap the “tickets” icon (in the app footer).
6. Find your order (under “Upcoming” or “Past tickets”). The tap to select.
7. View registration information, event information (date and location), add to calendar, view the event listing, save the ticket as an image, add to Apple Wallet, or show the QR code for scanned entry at the event.
Mobile (Android):
1. Download the Eventbrite App.
2. Open the app on your device.
3. Enter the email address you used to register.
4. Enter your password.
5. Tap the profile icon (far-right side of the bottom toolbar).
6. Find your order (upcoming events show first. Swipe up to reference tickets registered to past events).
7. Tap the “tickets” icon to select.
8. View registration information, event information (date and location), add to calendar, view the event listing, save the ticket as an image, or show the QR code for scanned entry at the event.
NOTE: If you haven't set a password for your account, Eventbrite will email you a link to set it. If you've forgotten your password, reset it.
— Contact us
If you still can’t find your tickets, contact us with the name on your order and purchase date. We can find your order and resend the confirmation email.
https://www.rarediseasefilmfestival.com/contact
Q. Is there a limit to how many tickets I can buy at once?
A. No.
Q. Can I buy tickets at the door?
A. For now, we are only selling advance tickets through Eventbrite.
Q. Are tickets transferable?
A. Yes. As long as you have a ticket from Eventbrite--either an electronic ticket on your device or a printed ticket--you may enter the festival.
Q. If I am unable to attend, how do I transfer my ticket to someone else?
A. You can either print out your ticket and give them the paper copy, or update and edit your order information. Here's an Eventbrite tutorial, showing how to update and edit your order information so the other person can attend in your place:
https://www.eventbrite.com/support/articles/en_US/How_To/how-to-update-your-ticket-registration-information?lg=en_US
NOTE: If you had tickets purchased on your behalf, you won't be able to log in and update the information on the original order. The original ticket buyer will have to perform the transfer in this case.
Q. Do I need a ticket to each slate of films I want to attend?
A. Yes. Our festival is made up of several slates of films over two days. When you buy a ticket, that ticket will allow you entry to that slate only. If you want to attend a film that is part of a different slate, you must also buy a ticket for that other slate.
Q. Do I have to bring my printed ticket to the event?
A. No. We also accept electronic tickets.
Q. How do I use the Eventbrite phone app?
A. Here's a tutorial for you:
https://www.eventbrite.com/support/articles/en_US/Multi_Group_How_To/how-to-use-the-eventbrite-iphone-app?lg=en_US
Q. The name on the registration/ticket doesn't match the attendee. Is that okay?
A. It is, as long as the attendee is able to present at our entry point either (1) a printed ticket or (2) an electronic ticket. If you don't want to use a printed ticket, and instead want to transfer your electronic ticket to someone, you'll need to update and edit your order information. Here's an Eventbrite tutorial, showing how to update and edit your order information so the other person can attend in your place:
https://www.eventbrite.com/support/articles/en_US/How_To/how-to-update-your-ticket-registration-information?lg=en_US
Q. What if a slate is sold out?
A. Depending on demand, we may schedule a second screening of that slate, which we'll announce on our website, Facebook, and LinkedIn. Or if you'd like to be notified as soon as they go on sale, you can subscribe to our mailing list here:
https://www.rarediseasefilmfestival.com/mailing-list
Q. Is it possible to attend every single slate of films?
A. No. We have some slates occurring simultaneously.
Q. You seem to have some numbers missing. There's no slate 1 on day 2, for example. Is this a mistake?
A. No, this isn't a mistake--those slates are to be announced, and will go on sale as we get closer to the event. Watch our website, Facebook, and LinkedIn for those announcements.
Or if you'd like to be notified as soon as they go on sale, you can subscribe to our mailing list here:
https://www.rarediseasefilmfestival.com/mailing-list
Q. How do I attend speaker sessions?
A. We don't plan to sell tickets to any of the speaker events. However, you can only gain entry to those events if you are a ticketholder to at least one film slate at the festival. In other words, any ticketholder for any and all screenings is also welcome to hear any and all speakers, on a first-come, first-seated basis.
Q. If I've bought multiple tickets for others, do I need to give a unique ticket to each person?
A. Yes. We will scan the tickets for entry, and no ticket can be scanned more than once.
Q. Do you offer refunds?
A. No.
TRAVELING TO THE FESTIVAL
Q. Where is the festival?
A. Mission Bay Conference Center at UCSF, 1675 Owens St #251, San Francisco, CA 94158 (https://goo.gl/maps/LkofALarGbGEB4v26)
Q. Where can I park?
A. There are three garages and one surface lot near the conference center (all three garages have chargers for electric vehicles):
1835 Owens Street Garage
Located across from the Mission Bay Hospital
1625 Owens Street/Rutter Center Garage
Located next to the Mission Bay Community Center, entrance is off of 16th Street
1650 Third Street Garage
Located just north of 16th Street
Nelson Rising Lane surface lot 1
Located on the northwest side of the UCSF Mission Bay campus. Enter via Nelson Rising Lane.
Public parking rates at Mission Bay are as follows:
● 0-1 Hours = $4.00
● 1-2 Hours = $8.00
● 2-3 Hours = $12.00
● 3-4 Hours = $16.00
● 4-5 Hours = $20.00 (24-hour comp sticker rate)
● 5-6 Hours = $24.00
● 6-7 Hours = $28.00
● 7-24 Hours = $32.00 (daily maximum)
Motorcycle parking rates are as follows:
● 0-1 Hours = $4.00
● 2-24 Hours = $6.00 (daily maximum)
Disabled parking rates are as follows:
● 0-1 Hours = $4.00
● 2-24 Hours = $7.00 (daily maximum)
Q. How can I get to the festival using public transportation?
A. You have two options: MUNI, and BART/USCF shuttles.
MUNI
T-Third Metro Line connects all Third Street neighborhoods to the full Muni Metro system. The T-Third Metro Line picks up at 4th and King Caltrain Station and at the Embarcadero BART station. Stop: UCSF Mission Bay Station on 3rd Street, opposite the campus.
BART/UCSF Shuttles
Disembark at the 16th Street Mission BART station. Pick up the UCSF Shuttle-Red Line at the northeast corner of the intersection, in front of Burger King. Shuttles run every 20 minutes to 4th Street, UCSF Mission Bay campus.
MISCELLANEOUS
Q. Is it too late to sponsor this festival?
A. Yes, our sponsor deadline was August 1, 2019.
Q. Is it too late to submit my film to this festival?
A. Yes, our final submission deadline was June 7, 2019.
Q. Can you help me make a film about my rare disease, or find me a filmmaker or some funding to make my own film?
A. We have produced one rare-disease film, as part of our 7000 Films Wanted initiative. We are not currently accepting applications for new films, but we may reopen this program at some point later. Join our mailing list to be notified if and when we do so:
https://www.rarediseasefilmfestival.com/mailing-list
Q. Will there be an opportunity to meet any of the filmmakers?
A. Yes. Some of our filmmakers plan to attend the festival, and those present will conduct Q&A sessions after the slates in which their films appear.
Q. Who are the sponsors of this festival?
A. We're extremely grateful to our sponsors: Premier Research, Sanofi Genzyme, Horizon, Takeda, CSL Behring, Vertex, Ovid Therapeutics, Openly Rare with Paul Kidwell, BioMarin, Signant Health, BridgeBio, Bausch Health, The Menkes Foundation, Ultragenyx, and Believe Ltd.
We also want to thank our promotional partners: NORD, Global Genes, Beyond the Diagnosis, and CheckRare.
Q. How can I sponsor future events?
A. Aside from this festival, we also arrange special film screenings and speaker events about rare disease. We would love to explore ways to work with you. You can reach us through our website here:
https://www.rarediseasefilmfestival.com/contact
Q. Where can I contact the organizers, if I have a question that isn't answered here?
A. You can reach us through our website here:
https://www.rarediseasefilmfestival.com/contact
Q. How can I join your mailing list, to be notified of all developments about the festival, and everything else you do?
A. Just sign up here:
https://www.rarediseasefilmfestival.com/mailing-list