Thank you for attending SDS-POPS 2024, the global Shwachman-Diamond Syndrome Patient AdvOcacy and Partnering Summit. As we continue to expand the SDS Alliance’s programming and engagement opportunities, your feedback is very important in shaping our work moving forward. Please fill out this anonymous 5-10 minute survey to share your experience with the SDS-POPS team. We will only ask for your name and contact information if you indicate that you would like to receive Dr. Fajgenbaum's book or learn more about specific research/advocacy opportunities.
How would you rate the following aspects of the summit on a scale of 1 to 5 (5 being the highest positive score)?
The overall experience with the summit.
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5
Session I: Patient stories for impact. Were the topics and contents helpful to you?
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5
Session II: The cosmos of research (clinical trials, basic research, natural history studies, qualitative research, and more). Were the topics and contents helpful to you?
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Session III: SDS Alliance collaborations (mouse models, ICD-10 code, SDS patient LENS project, SDS-GPS, Genetic Testing and Newborn Screening) . Were the topics and contents helpful to you?
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Scientific talks: Was the content level right for you?
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SDS POPS meeting center and platform navigations. Was it easy for you to access and navigate?
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5
Would you like to share more thoughts on any of the above?
Did you join SDS-POPS real-time on the meeting platform through Zoom, or watched the recording at a later time?
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Joined SDS-POPS real-time through Zoom via the meeting center
I didn't have time for either options, but plan to watch the recording in the future
Watched the recording later
Attended both real-time AND watched the recording (or parts of it)
Other
Have you used any of the translation tools available to access the meeting to content in a language other than English?
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I only accessed the contents in English
I used Zoom's caption translation tool (while attending in rea-time)
I used YouTube's automatic caption translations (while watching the recording)
I asked a friend/family member to translate for me
Other
Which language did you use? How did the translation method work for you?
How did you hear about the POPS Summit? Select all that apply.
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Facebook
X (Twitter)
LinkedIn
WhatsApp
SDS Alliance email/Newsletter
From a friend/family
From a colleague/speaker
From my doctor/HCP
Other
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 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
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
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.
Adult Patient
Adult 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
Do you have comments/suggestions on how we can improve future SDS-POPS and other meetings? This can include the logistics, contents, timing, or any other aspect that matters to you.
Please share some general feedback (testimonials) we can use to share with the community to encourage families and professionals to join future events. Or share any other feedback you would like to share with the SDS-POPS team.
We are developing and refining a variety of information resources for both the patient community and the medical community. What topics would be most helpful to you and your care team?
Genetic testing (why it's needed and how to access it)
Bone Marrow Surveillance (to asses whether a transplant is warranted)
Pancreatic Exocrine Insufficiency, Feeding, and Nutrition (including pancreatic enzyme replacement therapy PERT)
Vaccinations (general considerations and recommendation for SDS patients)
Neurocognitive and developmental assessments (recommendations for SDS patients)
Liver issues in SDS
Dental and oral challenges (tips and recommendations)
Infections and fever protocol
Registries and biobanks as a resource for patients and researchers
Support resources for patients and their families
Stem cell transplant in SDS (general guidance and factors to consider)
Growth and Skeletal issues in SDS
Diabetes and glucose regulation in SDS
Growth charts and challenges in SDS
School resources and special education support
Other
What services would you or your family like to access? Please select all that apply.
Connecting (1:1) with other SDS patients and families who have similar experiences as you, live near you, and/or speak the same language
Receiving a welcome package designed for families who are new to the SDS Alliance community (including simplified information about SDS and the SDS Alliance, support resources, and comfort items lovingly hand-selected by our volunteers)
Finding healthcare providers with SDS expertise in my area
Watching webinar recordings or short videos featuring SDS experts and peers
Accessing written educational resources regarding SDS science, research updates, and the therapy development process
Participating in interactive webinars featuring SDS experts and peers
Accessing educational resources regarding clinical care, diagnostics, and support services
Receiving relevant updates about clinical trials and other research opportunities
Joining virtual peer support and community groups for SDS families through video calls
Joining virtual peer support and community groups for SDS families on Facebook or other platforms
Other
Do you have requests or ideas for new programming the SDS Alliance team should explore and maybe offer in the future?
Would you like to learn more about specific projects/research opportunities highlighted at SDS-POPS? Or join our mailing list?
We will only ask for your contact information if you do.
Yes, please tell me more about the following opportunities
SDS-GPS: Global Patient Survey and Collaboration Program by the SDS Alliance. Now open to all patients and caregivers, and available in five languages!
SDS Patient LENS Study: Investigating the Lived Experiences, Needs, and Stories of individuals with SDS and their caregivers.
EL-PFDD Meeting (Summer 2025): Externally Lead Patient Focused Drug Development meeting to give the FDA and drug developers an opportunity to hear directly from the SDS patient/caregiver community
4WARD Study by X4 Pharma
Registries and Natural History Studies available in my area
Genetic testing opportunities (such as Probably Genetic and the Rare Genomes Project
Community connection and support opportunities
Upcoming fundraisers (i.e. Million Steps Closer to #CureSDS October 25-31)
SDS Awareness Day and Action Week activities and opportunities
Other
Would you like to receive a signed copy of Dr. David Fajgenbaum's bestselling book "Chasing My Cure"? If yes, we will ask for your contact info and shipping address. We are offering them to the first 10 SDS-POPS attendees who submit this form (5 real-time attendees and 5 who watch the recording once posted).
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yes
no
Would you like to join the SDS Alliance and Global Network mailing list? You can unsubscribe or update your preferences anytime using the links in the footer of emails I receive from the SDS Alliance.
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Yes, please add me to your email list and Global Network.
No, don't add me to your email list. (This won't remove you if you joined in the past).
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