13 ‘Rare Disease Truths’ that will change your perspective

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.

1. Diagnosis is a privilege

Alea Ricklefs @AleaRicklefs

2. Being a support to families is bittersweet

Rachelle Dixon @RachelleM_Dixon

3. You’re an expert, like it or not

Sabina Kineen @sabkin12

4. Working for treatment that may not come in time

Neena Nizar @NeenaNizar

5. The words you say matter, and ‘be patient’ is hard to hear

Amy Casey @hygienie1

6. For some, the science just isn’t there. Yet.

Adam Johnson - DadVocate @RareDiseaseDad

7. ‘The Folder’ or ‘The Binder’ is something all rare parents know about

christina @cmutena

8. Sharing hard truths with family

Olivia Viola @theoliviaviola

9. Nothing should be done for the patient without the patient

Khrystal K. Davis, JD @KhrystalKDavis

10. The best days of my life have come after my diagnosis

Andra Stratton @livinlavidalopo

11. Embracing the future and the unknown

Marni Cartelli @Purrfectly_Rare

12. Your life will never be normal again

Rachel @Rachel10302016

13. Letting yourself dream for the future

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!


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