Love is in the RARE – Tips for Love from the Rare Disease Community

February 2, 2024

Valentine’s Day celebrates romantic love, but how does rare disease throw a curve into typical loving relationships? Is it too hard or impossible to have a date night with your partner because of the medical care demands? How is looking for a partner different with a chronic illness? Do you need to speak a different love language to special needs children?

Global Genes has compiled some resources that might be helpful.

Looking for Love (Love on the Spectrum)
By Danny Levine

Romance While Rare
Session from the 2020 Global Genes Patient Advocacy Summit

The 5 Love Languages for Special Needs Families on A Special Hope podcast

Challenging Taboos in Sex and Sexuality for Rare and Disabled Patients
Session from the 2021 Global Genes Patient Advocacy Summit

Sex + Disability Parenting | Ways It Takes a Hit + Ways to Reclaim It w/ Amanda Griffith-Atkins On The Rare Life podcast

Sex, Hugs, and the Chronic Toll by Kimberly Warner

Sick But Social: Love Is Blind and Fabulous By Stacey Philpot

Pain Points episode on Why we can’t have Date Nights.

RARECast: Looking for Love with a Rare Disease

Diaries of a First Time Caregiver: Learning About Self-Love
By Sammy Witness

Sex When You’re RARE
Session from RARE Adults Track at the 2022 Global Genes Patient Advocacy Summit

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