Pompe Alliance Survey Reveals Gap in Mental Health Care
Unmet need: mental health of rare patients and caregivers
Only 10% Are Recommended Mental Health Support at Time of Diagnosis, Yet 75% Want Assistance
These findings underscore an urgent need to prioritize mental health care for the Pompe community.”
NEW YORK, NY, UNITED STATE, January 30, 2024 /EINPresswire.com/ -- The Pompe Alliance, in collaboration with RAM & MyRareData, recently conducted a survey revealing a significant unmet need in mental health care in the Pompe Community. — Heather Shorten, Executive Director, Pompe Alliance
Across both individuals diagnosed with Pompe and their caregivers, only 10% were recommended a mental health professional at time of diagnosis, although 75% expressed a desire for such support.
The survey also found that 50% of the Pompe disease community has been diagnosed with a mental health condition, and a third have had suicidal thoughts. Caregivers are similarly affected, with 60% having a mental health diagnosis.
“These findings underscore an urgent need to prioritize mental health care for the Pompe community”, says Heather Shorten, Executive Director, Pompe Alliance.
But the Mental Health support provided must understand the living experience of the Pompe community. Indeed only ⅓ rd of the individuals diagnosed with Pompe disease who received mental health support indicated that it was beneficial.
The Pompe Alliance will use these results as it continues to work collaboratively with its community and stakeholders to build appropriate mental health resources for its members.
To access the details of the survey, visit https://www.rareadvocacymovement.com/_files/ugd/850d88_a757cd8f2faa4e7b92a7c2b565e45479.pdf
About the Pompe Alliance
Founded in 2018, the Pompe Alliance creates positive change for those affected by Pompe Disease by fostering awareness, education, and advocacy.
Contact: Heather Shorten, pompealliance@gmail.com
About RAM
Rare Advocacy Movement actively empowers the rare condition community through education, collaboration, and robust advocacy efforts.
Contact: Nadia Bodkin, nbodkin@rareloveventures.com
About MyRareData
MyRareData assists rare disease patient groups by fostering mutually beneficial digital health collaborations with industry.
Contact: JC Muyl, jc@myraredata.com
Heather Shorten
Pompe Alliance
PompeAlliance@gmail.com
Legal Disclaimer:
EIN Presswire provides this news content "as is" without warranty of any kind. We do not accept any responsibility or liability for the accuracy, content, images, videos, licenses, completeness, legality, or reliability of the information contained in this article. If you have any complaints or copyright issues related to this article, kindly contact the author above.
