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Alentis Deepens ADC Strategy Through New Claudin-1 Collaboration With PinotBio
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Living with focal segmental glomerulosclerosis (FSGS) can come with challenges that extend far beyond managing symptoms. From navigating uncertainty to adjusting everyday routines, every patient’s experience is unique.
We’re looking to connect with individuals diagnosed with FSGS who may be interested in sharing their experiences and helping others feel less alone in their journey.
Your story matters, and your perspective deserves to be heard. If you or someone you know is living with FSGS, we’d love to hear from you! Click here: ow.ly/8ehG5101vPY or the link in our bio to learn more.
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Next Generation of CystinosisWe want to hear the lived experience of adults with cystinosis!
Check it out:
nextgencystinosis.org/recruitment/
👉 How to Join:
Click the link to complete your RSVP and select your available times: tinyurl.com/NGCResearch
If you have questions or need assistance registering, call Engage Health at 651-994-0510.
Please feel free to share this post with others in the cystinosis community!
#AccessIsLove #CystinosisSolidarity #LysosomalDisease #MultisystemicImpact #ReimagineRare #EngageHealth #NextGenerationOfCystinosis
[ID: the graphic uses the colors black and green to frame a white background. The following information is written on top of the white:
Living with Cystinosis as an Adult: Community Insights Study
Sponsored by Next Generation of Cystinosis
Improving the understanding of the lived experience and disease burden of adults living with cystinosis by characterizing relevant physical, emotional, and psychosocial outcomes.
To be eligible for this study you must:
• Be 18 years or older diagnosed
with cystinosis
• Be able to read, write, and communicate in English
• Grant informed consent
• Complete a RSVP/survey and interview (approximately 60-90 minutes)
• Provide documentation of disease
If you would like to participate in the research interviews please:
Scan the QR code or enter the link in your browser to RSVP with dates and times that you are available.
A $200 honoraria will be provided to eligible participants following study completion.]
