June is PRIDE Month: Find resources for LGBTQIA+ in rare disease community
June 22, 2023
June is PRIDE month, and Global Genes wants to take this opportunity to offer resources and space to talk for the LGBTQIA+ community within the rare disease space:
LGBTQ Inclusive Therapist https://www.inclusivetherapists.com/
OutBio – https://www.outbio.org/
OUTbio is the biotech industry’s largest LGBTQ professionals group whose mission is to empower the LGBTQIA+ community and its allies in biotechnology and affiliated industries.
RARE Pride Project – https://breaking-down-barriers.org.uk/the-rare-pride-project/
There appears to be very little information about the number of people affected by rare conditions who are also part of the LGBTQIA+ community. By working alongside people with lived experience we want to ensure:
* voices are heard
* experiences of healthcare and support services are understood
* the changes needed are identified
Housing Assistance for LGBTQ+ Youth:
Advancing health equity for the LGBTQIA+ community
Pharma Usa 2023
“Healthcare systems are failing the LGBTQIA+ community and transgender individuals in particular. Too often they are not getting the care they need. The stigma and discrimination of recent decades die hard and continue to negatively impact LGBTQIA+ healthcare outcomes in many cases. New approaches and new attitudes to delivering healthcare, without discrimination, are needed to ensure that this community thrives.”
Within the rare disease space, those challenges are magnified when you consider the number of times someone diagnosed with a rare disease has to seek medical care or treatment.
Global Genes Resources
Global Genes offers a space to talk about challenges and wins for the LGBTQIA+ community in the rare disease space in the RARE Portal:
https://www.rarecommunity.org/discussion/pride-in-rare – please make sure you are logged into the RARE Portal before you click on this link!
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