Do you struggle to get medication for your rare disease?

Hi everyone,

Living with a rare disease often means navigating challenges most people never see. One of the biggest? Accessing medication. Some members say they face shortages, long delays, or lack of coverage, even for essential treatments.

• Have you had trouble getting the medications you need?
• What barriers (cost, supply, prescriptions) do you run into?
• What advice would you share with others in the same situation?

 @TGanino @PBONNIE80 @mcheney1214 @RedaOkda @Ellenoc @TJones @Ambaumel @Carolbyrd @Arlene33 @TAQUANA @MsGale @Okiewife @TCoffey @JulieKegg @Ceci60 @Jescie87 @mchubbard29 @Chellylove @doreroc7 @Caroledith @BrittSays12345 @haywood7wm @KKblue @Brenda510 @LoisMackey @Tanzerlia @Vidmaklin @Emmabrim39! @Lisavas2566 @sandramckinney @Yayaya @PM1DYR @EpiEpy @Pixiestyx @Nguesman @Lovetosave65 @kayoung01 @jones_en1 @Marl3n31 @Gmamoe19 @KTAY0884 @Maryann7 @HAripriya @Lassie @Nclady1966 @wolfgang101 @chronically.wayward @EDEEJO @Earljam @User767 @Chelleryan @MarkLogtenberg @Jeromekxmas2 @Varyslannister @rebelbuddhist @Bclack @Countrypride1218 @MD.ShahAlam @LeeSikvel @Rojkwirk @Tanaki @oOMR_SPYOo @ronalddd @Hittani @alicewalker @PaulBrennan @Nanato8 @Sli0807 @Karincody1 @JordanBurns @LoLuben @Terri4 @riteway211 @Kathi53 @Eydie5 @KimLangley71 @Pipaluk @Marinako @Sparky5371 @Menateet72 @Jennlrose826 @stasnislav1 @FabianGonzz @Assignmenthelp @membrooks @ChangKook @Peter254 @Alexisrose @remarc @Sandrinedebretagne2024 @amorapotter @dianereese @aalmanzz @Pabbpe3 @jutt804 @TravisMendoza @MayaPrescott @sabrinacollins @JulieC72

Let’s share strategies, stories, and solidarity.

Somya from the Carenity team 🌼