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Sorry for being such a puzzle, doc. At least I'm keeping things interesting? #RareDisease #rarebutnotalone #rarediseasereality #PatientWorthy
Dear CPN Community, Courageous Parents Network
Courageous Parents Network is leading a research project (with collaborators at Stanford Medicine, Genetic Support Foundation, and Columbia University). We are recruiting parents who have received a Trisomy 13 or 18 diagnosis for their child.
The study hopes to learn about the information and support needs of parents who have received a Trisomy 13 or 18 diagnosis during or after pregnancy. We also hope to better understand the barriers that families experience in accessing or utilizing these resources. Interested parents would complete an in-depth zoom interview, which is expected to last about 60 minutes. It is completely voluntary, confidential, and there is no cost to participate. As a thank-you, you would receive $100 via gift card.
If you are interested or have questions, please contact me directly at [email protected] or reply to this email.
Thank you,
Chrissy
--
Chrissy Salley, Ph.D.
Director of Clinician Education and Engagement
Courageous Parents Network
www.courageousparentsnetwork.org
Assistant Clinical Professor, Department of Psychiatry
Icahn School of Medicine at Mount Sinai
Are you a Clinician? Sign up for our Clinician Portal to gain access to resources designed just for you.
Courageous Parents Network, Newton, MA, Newton, MA 02458-2517
www.courageousparentsnetwork.org
Topically curated resources to support families and other caregivers as they navigate the illness journey. Navigating Medical ComplexityThree phases of the...
When it comes to heart health, awareness can make a difference.
Understanding conditions like hypertrophic cardiomyopathy (HCM) can help spark important conversations, encourage people to ask questions, and empower individuals to advocate for their health.
Swipe through to learn more about HCM, and save this post to help spread awareness!
If you're interested in sharing your story, click here: ow.ly/FWow50ZZ5ME or click the link in our bio.
#hypertrophiccardiomyopathy #hcmawareness #HeartHealth #oHCM #PatientAdvocacy #heartdiseaseawareness #shareyourstory #PatientWorthy
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