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
Joined February 2017
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Watch LIVE on our FB Page or come in person this morning at our #NewbornScreening Legislative Breakfast. The aim is to inform the legislature about the newborn screening process and the critical importance of early diagnostics and treatments.
#rarediseases #alpolitics
We are off to the races!! The 10th annual rare disease symposium has started! Are you joining us? You can still join us virtually at alrarediseaseday.org #rarediseases #rarediseaseday
Here is our exciting agenda for the 10th annual #raredisease symposium! Join us on March 10 in #Alabama! We have in person and virtual options. Register today! @ChildrensAL @uabmedicine @cctsnetwork #rarediseaseday #rarediseaseday2023 #RareDiseases
Join us for the 10th Annual #rarediseases symposium on March 10 in #Alabama! We have in person and virtual options. Register today! @ChildrensAL @uabmedicine @cctsnetwork #rarediseaseday
We are excited to be logged on and ready to listen to #clearingthepath2022
We’re all smiles counting down the clock until our Clearing the Path research showcase is back in person tomorrow! We’re also offering a virtual option where you can be apart of the conversation from your home! See you tomorrow morning at 7:30 AM 🏡#clearingthepath2022
Renie Moss on how patients and families to keep up with available treatment options - “I go to clinicaltrials.gov to know who is doing the research and where it is being done once a month”
We have started the 9th annual #rarediseaseday symposium with Natasha Shur from @ChildrensNatl talking about creating a telemedicine model for clinical genetics Join us at go.uab.edu/rarediseasedaysym…
Alabama Rare retweeted
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
Thank you Chris from @USRepGaryPalmer office for meeting with residents of Birmingham and surrounding area to discuss priority policies for our alabama #rarediseases community as part of #RareDC2022
Alabama Rare retweeted
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
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
We are so excited to co-host #raredisease free symposium with @uabmedicine @childrensofal @cctsnetwork it’s on advances in telehealth and therapies & will have advocate panel about finding your voice ft. @OnceUponAGene @Srotberg15 @Rasheeradiara & Morgan Cheek register today!
We are so excited to partner with @BioCrystPharma to light up businesses in Birmingham in #rarediseaseday colors on Monday February 28! Learn more at alabamarare.org/light-up-for…
Happy #rarediseaseday!! Here is an article featuring our Director of Development and Programs, Brooke Thomas. Read at uab.edu/medicine/mstp/curren… to learn more about Brooke's journey with #hurlersyndrome and be inspired to share your own story! #alrarediseaseday #rareisnotrare
Happy #RareDiseaseDay we are very thankful for everyone who attended and helped with our #raredisease symposium this weekend! We wish you continued perseverance, resilience and strength on your #RareDiseases journey!
Alabama Rare retweeted
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
There are so many ways to get involved at the legislative level - thank you Brooke and @SwapnaSpeaks for giving us resources to use. Four organizations to get you started are Alabama Rare, @EveryLifeOrg, @RareDiseases, and @GlobalGenes
Alabama Rare retweeted
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!