Registration Form for SDS Alliance Project PACER Kickoff Meeting on June 4th, 2025, 6-8pm
Hybrid (In-person AND virtual/online). All details coming soon at www.SDSAlliance.org/pacer. Registration for in-person attendance closes on May 14th. Note that this registration form is for the Project PACER meeting only. Please register for the SDS EL-PFDD meeting separately. Both are part of the 100 Voices to #CureSDS campaign.
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
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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?
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in-person (Cincinnati, Ohio, June 4th, 6pm-8pm)
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 a FREE campaign T-shirt (see a mockup below). Please enter what size(s) you would like. They will be available for pickup at the SDS PFDD / Project PACER 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. We are currently prioritizing genetically confirmed families. Would you like more information and the application form? If yes, we will follow-up with more information.
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Yes
No
Other
Dinner will be provided, including chicken and vegetarian options. 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. We have a discounted hotel block available for $189 plus tax per night at the event venue (The Summit Hotel, Cincinnati, OH). Book at https://book.passkey.com/go/0608SDSPFD. For our internal planning purposes, 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 this meeting, there is two other important SDS events planned in Cincinnati: The SDS PFDD meeting on June 4th, from 10 am to 3:30 pm; and the SDS Scientific Congress, June 5-8. THIS FORM is for the Project PACER Kickoff meeting only. Learn more at www.sdsalliance.org/pacer. To register for the SDS PFDD meeting and/or the SDS Scientific Congress, you must register directly through the respective forms. To learn more about the SDS PFDD meeting, visit www.sdsalliance.org/pfdd; To learn more about the SDS Congress, visit www.sdscongresscincinnati.com. For our internal planning purposes, it would be helpful to understand which meetings you are planning to attend. Please select all that apply. Your choice below does not constitute registration.
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SDS PFDD Meeting - attending in person
SDS PFDD Meeting - attending virtual/online
Project PACER kickoff dinner meeting - attending in person
Project PACER kickoff dinner meeting - attending virtual/online
SDS Scientific Congress - in person
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: