Registration Form for the SDS EL-PFDD Meeting on June 4th, 2025
Hybrid (In-person AND virtual/online). All details at www.SDSAlliance.org/pfdd. Registration for in-person attendance closes on May 14th. Note that this registration form is for the SDS EL-PFDD meeting only. This meeting is sometimes referred to as the SDS Voice of the Patient Meeting. If you wish to attend the SDS Congress, you must register for that separately on the SDS Congress website.
Your Name
*
First Name / Family Name
Last Name / Given Name
Your Email Address
*
example@example.com
Your Primary Language. (We aim to offer our resources in multiple languages in the future.)
Please Select
English
Spanish
German
French
Italian
other
If you selected 'other', please enter your primary language here.
Country
*
State (US)
*
What is your connection to Shwachman-Diamond Syndrome (SDS)?
Please select all that apply.
I am a/an
*
adult diagnosed with SDS
minor under the age 18 years, diagnosed with SDS
parent/primary caregiver to someone diagnosed with SDS
suspecting or pursuing an SDS diagnosis for myself or a loved one
friend/family member of someone with SDS
researcher interested in SDS
healthcare provider interested in SDS
diagnostic provider for SDS
pharma/biotech representative interested in SDS
FDA or other regulatory agency staff/representative
advisor/mentor to the SDS Alliance
sponsor/grant maker to the SDS Alliance
service provider/vendor to the SDS Alliance
nonprofit representative from a related/rare disease community
other
If other, please explain
Are you registering to attend in-person or virtually/online?
*
in-person (Cincinnati, Ohio, June 4th, 10am - 3:30pm)
virtually/online through our interactive webinar
How many people (members of your household) - including you - are you registering for this meeting? Enter 1 if just you.
*
Please add the name, relationship, and connection to SDS of your family member(s) who will join, and whether they will join in person or online/virtual. For example, John Smith (husband, SDS dad).
*
First and Last Name, relationship to you, connection to SDS, and in-person or virtual attendance
We are offering all in-person attendees who register by March 15th a FREE campaign T-shirt for the SDS PFDD meeting (see a mockup below). Please enter what size(s) you would like. They will be available for pickup at the PFDD meeting check-in table on June 3rd and 4th. To opt out, enter "none". Additional apparel is available in the SDS Alliance Bonfire store at www.bonfire.com/store/curesds for shipping worldwide, ahead of the meeting.
Please enter what size(s) and style you would like, e.g. Unisex or Women's XS-XXL, Youth S-L
(If you are considering in-person attendance): We may be able to offer travel stipends to a few patients/families who need it. Would you be interested in applying if offered? If yes, we will follow-up with more information.
*
Yes
No
Other
(If you are considering in-person attendance): We are planning to offer childcare at the meeting venue, provided by KiddieCorp. This service will be offered free of charge to our speakers/panelists. We may be able to extend this service to other attendees as well, either free or at a discount, depending on our funding. Would you be interested in childcare? This is not a commitment, but will help us plan. We will share more information with participants.
*
Yes, but only if its free
Yes, and I would be happy to pay a reduced rate of $250/child for the day
No, I won't be traveling with a child/children
Other
Breakfast, lunch, and refreshments are included in the meeting. Additionally, we are excited to announce that we will end the day with a dinner event: Project PACER Kickoff Meeting (details coming soon at www.SDSAlliance.org/pacer). Which meals are you planning to enjoy with us? Please select all that apply.
*
Breakfast (before the meeting)
Lunch (during lunch break)
Refreshments (afternoon after the meeting)
Dinner (with Project PACER Kickoff Meeting)
None
Other
Do you have dietary restrictions / food allergies we should be aware of? Write "none" if not applicable.
*
You will be responsible for booking your own hotel room if needed. There will be a discounted hotel block available for $189 per night at the event venue. Are you planning to stay there? This is not a commitment, but will help us plan.
*
Yes, 2 nights (6/3 and 6/4)
Yes, 1 night (6/4)
No, I am local or plan to stay elsewhere
Other
You will be responsible for booking your own hotel room if needed. We have a discounted hotel block available for $189 plus tax per night at the event venue (The Summit Hotel, Cincinnati, OH). Booking instructions will be emailed to registrants. This is not a commitment, but will help us plan. Please indicate which nights you are planning to stay. You will still need to make your registration with the hotel directly.
Tuesday night, June 3rd
Wednesday night, June 4th
None. (I am local or will stay elsewhere).
Other
Independently from the SDS PFDD Meeting, there is another important SDS event planned in Cincinnati: SDS Scientific Congress, June 5-8. THIS FORM is for the PFDD meeting only www.sdsalliance.org/pfdd. To register for the SDS Scientific Congress, you must register directly through the SDS Congress website at www.sdscongresscincinnati.com. For our internal planning purposes, it would be helpful to understand if you are planning to attend both the PFDD meeting and the Scientific Congress. Are you planning to attend both? Your choice below does not constitute registration.
Yes
No
Other
Can we add you to the SDS Alliance mailing list to send you updates about this event and progress towards our shared mission? You can unsubscribe or update your preferences anytime using the links in the footer of emails.
Yes, please add me to your mailing list
Adult Patient
Adult Patient
Minor Patient
Minor Patient
Caregiver
Caregiver
Friend/Family
Friend/Family
Pursuing Diagnosis
Pursuing Diagnosis
Research Network Member
Research Network Member
Clinician Network Member
Clinician Network Member
Nonprofit Rare Disease Community
Nonprofit Rare Disease Community
Industry Advisor
Industry Advisor
Mentors, Partners, Peers
Mentors, Partners, Peers
Volunteer (current or former)
Volunteer
Sponsor/Grant Maker/Business Partner
Sponsor/Grant maker/Business Partner
Service Providers/Vendors
Service Providers/Vendors
Diagnostic Providers
Diagnostic Providers
Pharma/Biotech Representatives
Pharma/Biotech Representatives
Submit
Should be Empty: