PostedFebruary 25, 2021 · 4 minute read
Throughout the month of February, rare disease patients, caregivers, family members and friends, have been sharing what it’s really like being part of the rare disease community using the hashtag #RareDiseaseTruth.
The hashtag and conversation was kicked off by Neena Nizar. Here are 13 of the many power truths that were shared that will change your perspective and help you understand rare disease below the surface.
Alea Ricklefs @AleaRicklefs
Rachelle Dixon @RachelleM_Dixon
Sabina Kineen @sabkin12
Neena Nizar @NeenaNizar
Amy Casey @hygienie1
Adam Johnson - DadVocate @RareDiseaseDad
Olivia Viola @theoliviaviola
Khrystal K. Davis, JD @KhrystalKDavis
Andra Stratton @livinlavidalopo
Marni Cartelli @Purrfectly_Rare
Anna Laurent @lilannalaurent
Thank you to the members of the rare disease community who took to social media to share their rare disease truths. If you are a rare disease patient or caregiver and want to advance rare disease research from home, find your rare disease program or jumpstart your condition at allstripes.com!