SDS POPS is coming to Paris — in person for the first time.
In May 2027, adjacent to the 12th International Scientific Congress on Shwachman-Diamond Syndrome, SDS Alliance is planning a community gathering in Paris, including an informal dinner on Saturday evening, a half-day community session on Sunday morning, and a casual family-friendly activity in the afternoon for those who would like to stay and explore Paris together.SDS POPS welcomes patients, families, caregivers, clinicians, and researchers to build a lasting partnership between the SDS community and the research world.We are in the early planning stages and would love to know if you are interested in joining us. Your responses will help us plan the right size, format, language support, and financial assistance for the event.This is an interest form only — not a registration. We will be in touch with more details as planning develops.
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
*
an adult diagnosed with SDS
a minor under the age 18 years, diagnosed with SDS
a parent/primary caregiver to someone diagnosed with SDS
suspecting or pursuing an SDS diagnosis for myself or a loved one
a friend/family member of someone with SDS
a researcher interested in SDS
a healthcare provider interested in SDS
a diagnostic provider for SDS
a pharma/biotech representative interested in SDS
an advisor/mentor to the SDS Alliance
sponsor/grant maker to the SDS Alliance
a service provider/vendor to the SDS Alliance
a nonprofit representative from a related/rare disease community
other
If other, please explain
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
Which SDS POPS events are you interested in attending? Select all that apply,
*
Saturday evening: dinner (May 29) - in person only
Sunday morning: sessions/workshops (May 30) - in-person and online
Sunday afternoon: informal family activity (May 30) - in person only
How do you expect to participate?
*
In person in Paris
Virtually / online
Not sure yet
How many adults in your group would attend?
*
Will you be bringing children? If yes, please list the number of children and their ages.
*
If in person, would you need childcare support during the Sunday morning session?
*
Yes
No
Not sure
Not attending in person
Would you need translation or interpretation services to participate fully?
*
Yes
No
Not sure
If you need translation or interpretation services, which language(s)?
Would you need financial support (a stipend) to attend?
*
Yes
No
Prefer not to say
Anything else you'd like us to know, or any questions?
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Yes, please add me to the mailing list
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