Alabama Rare (@AlabamaRare) profile picture

Alabama Rare

@AlabamaRare

An advocacy group formed to unite the rare disease community of AL to advocate for needs, provide support & education for patients, and awareness for the public

 Alabama, USA
alabamarare.org
Joined February 2017
  • Tweets785
  • Following300
  • Followers363
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Photo by Alabama Rare (@AlabamaRare)Photo by Alabama Rare (@AlabamaRare)Photo by Alabama Rare (@AlabamaRare)Photo by Alabama Rare (@AlabamaRare)Photo by Alabama Rare (@AlabamaRare)Photo by Alabama Rare (@AlabamaRare)Photo by Alabama Rare (@AlabamaRare)Photo by Alabama Rare (@AlabamaRare)Photo by Alabama Rare (@AlabamaRare)Photo by Alabama Rare (@AlabamaRare)
Today is #RareDiseasesDay in recognition of people with rare conditions and the need for equity and access to medical treatments. I’m thankful for the patients and families who allow me be a small part of their rare journey. #showyourstripes #icareforrare #LightUpForRare
Image from Anna C.E. Hurst, MD (@acedens)
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Join us on #RareDiseaseDay for a community discussion. Ask questions to some of our favorites experts and advocates. #SelfCare #Grief #MentalHealth #Hacks #Inclusion #EarlyIntervention @ot4lyfe @Inclusive_SpEd @SaritaEdwards @prk2 @angelaidcares
DISORDER: The Rare Disease Film Festival (@DisorderRare) profile pictureDISORDER: The Rare Disease Film Festival@DisorderRare26 Feb 2022
Join #thedisorderchannel and @onceuponagene.podcast on Discord for a chat on 2/28 with some of the most important people in rare disease: the patients, the parents, the providers, the siblings, maybe even some doctors. #raredisease #rarediseasechat #rarediseaseday
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Rare disease patients spend an average of 8 years searching for a diagnosis, & some search for decades. April Hudson spent 40 years searching for a diagnosis & finally found one, thanks to The Smith Family Clinic for Genomic Medicine #RareDiseaseDay2021 bddy.me/3sAgiRP
Image from Smith Genomic Clinic (@SmithGenomicMed)
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Great advice from Brooke Thomas of @AlabamaRare on building relationships when meeting with elected officials: Do your homework, mind your manners, don't make assumptions, share your story, clearly state your ask, open a dialogue, listen to feedback & FOLLOW-UP!
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Kudos to @AlabamaRare for featuring a speaker on relationships when one person is living with a #raredisease & for Dr. John Novak for covering the topic so thoughtfully. This is a big issue for many adults in the rare community.
Image from Stephanie Fischer (@RarePOV)
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Replying to @SmithGenomicMed @Kelly_M_East @UABNews @ChildrensAL @AlabamaRare
.@Kelly_M_East speaking now about the Alabama Genomic Health Initiative, a @UABNews & @hudsonalpha program providing genomic testing, interpretation, & counseling free of charge to residents in each of Alabama’s 67 counties #RareDiseaseDay2021 uabmedicine.org/aghi
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“Repealing the ACA would throw our health care system into chaos in the middle of a pandemic and a deep recession,” Arise’s @robynhyden said. It also would jeopardize coverage for the 1 in 3 Alabamians who have preexisting conditions. #SaveACA #alpolitics alarise.org/news-releases/ac…
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Alabama Rare retweeted
Debbie Drell (@DebbieDrell) profile picture
Debbie Drell@DebbieDrell9 Oct 2020
“how we could ever go back now [before telehealth]? Why ask someone to drive out to see me in the dead of winter when I can do the same doctor’s visit remotely?” #NORDSummit
Image from Debbie Drell (@DebbieDrell)
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Alabama Rare retweeted
Robyn Hyden (@robynhyden) profile picture
Robyn Hyden@robynhyden1 Oct 2020
Jane Adams of @CoverAlabama says that the number of people in the health insurance coverage gap in Alabama stacked up would equal 1,091 Saturn V rockets stacked up end to end. We can send a man to the moon, but not address this crisis for 300k+ ppl? #alpolitics 🚀 #South4MedEx
Image from Robyn Hyden (@robynhyden)
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Our friends at @YouretheCureAL are fighting to close the coverage gap in Alabama and all throughout the south because people need comprehensive care and treatment for heart disease. #CoverAlabama #alpolitcs #South4MedEx Check out their video explainer below ⬇️
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We're joining in #SouthernSolidarity to save lives and keep hospitals open across the south: southerners4medex.org ✅Sign the petition ✅Join us on Oct. 1st for a digital vigil #CoverAlabama #South4MedEx #alpolitics
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Happening NOW: Michele Puryear, Consultant, American College of Medical Genetics and Genomics discusses newborn screening as "A System Not a Test" #nbsbootcamp
Image from EveryLife Foundation (@EveryLifeOrg)
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It's not too late to experience the #LivingRareForum! This event provides the tools, info & support needed for everyone to live their best rare life. Register now using discount code: ONDMLRLS2020 before 8/31 to access the event recordings on-demand: bit.ly/33vEzPG
Image from National Organization for Rare Disorders (NORD) (@RareDiseases)
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Happy 55th birthday, Medicaid! 🥳 Celebrate with us today by asking your Congressional representatives to #ExpandMedicaid and #CoverAlabama. Use this link to email your representatives: coveralabama.org/alert.
Image from Cover Alabama (@CoverAlabama)
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Great slide! So true! Must haves for #advocacy! Pic from Darlene Shelton of Danny’s Dose Alliance #LivingRareForum
Image from Swapna Kakani, MPH (@SwapnaSpeaks)
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A diagnosis does not define you, it fuels your passion! - Darlene Shelton of Danny’s Dose #LivingRareForum
Image from Swapna Kakani, MPH (@SwapnaSpeaks)
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No organization or system is too big to take on - @ColleenBrunetti #pulmonaryhypertension #pha #LivingRareForum
Image from Swapna Kakani, MPH (@SwapnaSpeaks)
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Day 2 #LivingRareForum lets do this! When the day can start with Broadway and Disney it’s a good day :) thank you 😊
Image from Swapna Kakani, MPH (@SwapnaSpeaks)
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“Advocacy is possible. Advocacy works!” - @MatthewZachary #LivingRareForum
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“Annabelle’s brothers are her best therapists we say” - @mikeporath @TheMightySite #LivingRareForum Sibling support is real!
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