Speaker/Panelist Application for the EL-PFDD Meeting for Shwachman-Diamond Syndrome on June 4th, 2025. Applications are open until January 26, 2025.
This is your opportunity to step up and share your experience and perspectives with SDS - either as a patient, or a parent/caregiver - in a way that can make a difference and help the FDA, doctors, and researchers learn what SDS is like and what treatments and therapies are needed. Selected speakers will be notified in February, and will receive support in developing and delivering their stories through professional coaching in the spring. Travel/accommodation for the EL-PFDD meeting will be covered for families in need. Childcare may be available upon request. Learn more about this transformative meeting on the EL-PFDD information page at www.sdsalliance.org/pfdd.
Your Name
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First Name / Family Name
Last Name / Given Name
Your Email Address
*
example@example.com
Your Cell Phone Number
*
Please enter a valid phone number.
Your Primary Language.
Please Select
English
Spanish
German
French
Italian
other
If you selected 'other', please enter your primary language here.
Country
*
Address
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Street Address
Street Address Line 2
City
State / Province
Postal / Zip Code
What is your connection to Shwachman-Diamond Syndrome (SDS)?
Please select all that apply.
I am
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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
We are thriving to build a diverse and inclusive community and representation at the EL-PFDD meeting. Please share some demographic information if you are comfortable.
What is your ethnic background? Select all that apply.
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Caucasian/White
Black/African American
American Indian or Alaska Native
Asian
Native Hawaiian or other Pacific Islander
Hispanic or Latino
Prefer not to answer
What is your gender?
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Male
Female
Other/Non-binary
Prefer not to answer
Why are you applying to be a speaker at the EL-PFDD meeting for SDS? What is the purpose of this meeting?
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How has Shwachman-Diamond Syndrome impacted your/the patient's life?
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What would you like the FDA, researchers, doctors, and other stakeholders to know about your current treatments?
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What hope for future treatments and therapies will you be able to share?
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How did you learn about this opportunity?
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SDSF email
SDSF social media
SDS Alliance email
SDS Alliance social media
SDS Alliance webinar
SDS Registry communications
From your healthcare provider
Prefer not to answer
Other
Would you like to join the SDS Alliance and Global Network mailing list to receive emails from the SDS Alliance about this and other programs? You can unsubscribe or update your information anytime using the links in the email footer.
Yes, please add me to your email list and Global Network.
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
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
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