🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Great advice from Brooke Thomas of Alabama Rare 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!

There are so many ways to get involved at the legislative level - thank you Brooke and Swapna Kakani, MPH for giving us resources to use. Four organizations to get you started are Alabama Rare, EveryLife Foundation, National Organization for Rare Disorders (NORD), and Global Genes

Know your representatives!! alisonb.legislature.state.al.us

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

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!

Happy #rarediseaseday!! Here is an article featuring our Director of Development and Programs, Brooke Thomas. Read at uab.edu/medicine/mstp/… to learn more about Brooke's journey with #hurlersyndrome and be inspired to share your own story! #alrarediseaseday #rareisnotrare

We are so excited to partner with BioCryst Pharmaceuticals, Inc. to light up businesses in Birmingham in #rarediseaseday colors on Monday February 28! Learn more at alabamarare.org/light-up-for-r…

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 Sarita Edwards medicalmomma @angelaidcares

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 Gary Palmer office for meeting with residents of Birmingham and surrounding area to discuss priority policies for our alabama #rarediseases community as part of #RareDC2022

We have started the 9th annual #rarediseaseday symposium with Natasha Shur from Children's National Hospital 🏥 talking about creating a telemedicine model for clinical genetics Join us at go.uab.edu/rarediseaseday…

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 are excited to be logged on and ready to listen to #clearingthepath2022

Join us for the 10th Annual #rarediseases symposium on March 10 in #Alabama! We have in person and virtual options. Register today! ChildrensAL UAB Medicine CCTS #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 UAB Medicine CCTS #rarediseaseday #rarediseaseday2023 #RareDiseases

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

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