https://www.alabamarare.org/events daily 0.75 2025-02-27 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1548786978357-F7P0NSFCOXPO18LKD4XG/alabama-house-768x576.jpg Events https://www.alabamarare.org/events/2025rarediseasesocial monthly 0.5 2025-02-27 https://www.alabamarare.org/events/2025rarediseasesymposium monthly 0.5 2025-02-27 https://www.alabamarare.org/events/2024/2/29/rare-disease-day-networking-event monthly 0.5 2025-02-27 https://www.alabamarare.org/events/2024/3/1/2024-rare-disease-symposium monthly 0.5 2025-02-27 https://www.alabamarare.org/events/2021/1/17/virtual-rare-disease-symposium-2021 monthly 0.5 2023-11-09 https://www.alabamarare.org/events/2020nbsupdatecall monthly 0.5 2023-11-09 https://www.alabamarare.org/events/2020/2/21/rare-disease-symposium-2020-save-the-date monthly 0.5 2023-11-09 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1579802488255-9FWDQL5HR9U42LEG2KPB/2020+Saturday+RD+Symposium+page+1+jpg.jpg Events - Rare Disease Symposium February 22, 2020 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1579802553589-II8A3KYJ7P4HHI9590GE/2020+Saturday+RD+Symposium+page+2+jpg.jpg Events - Rare Disease Symposium February 22, 2020 https://www.alabamarare.org/events/2019/10/1/advocacy-webinar-with-katie-campbell monthly 0.5 2023-11-09 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1569967093232-LYRK6A8WW4NYILD6C651/Advocacy+Webinar+10.10.19.jpg Events - Advocacy Webinar with Katie Campbell https://www.alabamarare.org/events/2019/3/1/rare-disease-day-state-house-event monthly 0.5 2019-10-17 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1571335607108-07EBA3S9IW3WKMH6C7E0/2019+State+House+Save+the+Date+Flyer.jpg Events - Rare Disease Day State House Event https://www.alabamarare.org/events/2019/2/10/running-for-rare-diseasesbirmingham-marathon monthly 0.5 2023-11-09 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1571335831714-JFC5576HLNQSCCIA6N6U/Birmingham+Marathon+flyer.png Events - Running for Rare Diseases—Birmingham Marathon https://www.alabamarare.org/events/2019/2/13/wine-down-for-rare-diseases monthly 0.5 2023-11-09 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1571335688338-VD242T14A9D3FQ8YSKT2/RARE_WineDown_Red.jpg Events - Wine Down for Rare Diseases https://www.alabamarare.org/events/2019/3/2/alabama-rare-disease-symposium monthly 0.5 2023-11-09 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1571335779327-MSVLSXCWU4QYQOD7PVD8/March+2+2019+Save+the+Date.jpg Events - Alabama Rare Disease Symposium https://www.alabamarare.org/home daily 1.0 2022-07-21 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1549054354556-DL1J4E67VMF4ZT5ALNXN/IMG_8948.JPG Home https://www.alabamarare.org/alabama-rare daily 0.75 2019-01-21 https://www.alabamarare.org/travel-stipend-application daily 0.75 2020-02-03 https://www.alabamarare.org/about daily 0.75 2023-11-09 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1589496990870-S6IM62J14FHUBZ6B4M49/Swapna-7.jpg About Swapna currently resides in Huntsville, AL where she was born and raised. She is a professional keynote speaker and advocate in the area of rare disease healthcare delivery and the patient experience. Swapna was born with Short Bowel Syndrome, has required IV nutrition through a central venous catheter for 30 years and counting & nutrition through a feeding tube for 20 years, and has endured 65 surgeries including a small intestine transplant in 2014. Swapna has given several presentations across the U.S. through medical conferences, hospitals, medical schools/residencies, graduation ceremonies, and corporate events, including a TEDx talk. Swapna, in addition, does healthcare advocacy work both at the federal and state level for the Short Bowel Syndrome/Intestinal Failure and broader rare disease community. She received her Master’s in Public Health in 2020 from UAB and previously worked as the EveryLife Foundation’s State Advocacy Fellow. In 2017, Swapna worked in Washington D.C. for the National Organization for Rare Disorders (NORD) researching federal and state health policies and advocating on Capitol Hill to ultimately expand care for individuals with rare diseases. But, her desire to make an impact in her home state called her back to Alabama where she received all of her pediatric care. Inspired by her own personal healthcare experiences in Alabama and what she had learned of the rare disease community locally and nationally, Swapna created Alabama Rare. Email Swapna at Swapna@alabamarare.org https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1589496384204-K3MY1LU28GWEVYYTLGXJ/Brooke+Thomas About Brooke originates from deep in the heart of Texas, but has called the Alabama Gulf Coast home since 2017. She and her husband Mich have three children with MPS I, Hurler Syndrome, a rare disease caused by the lack of the enzyme alpha-L-iduronidase. In her professional life, Brooke has worked in non-profit management and advocacy training organizations across the Southeast. As a parent advocate, Brooke's focus is building inclusive communities, healthcare equity, and supporting the needs of patients & caregivers. Email Brooke at brooke@alabamarare.org. https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1549308342762-WCQXSBLVKXNC50CQGCVL/DSC_0433.JPG About https://www.alabamarare.org/news daily 0.75 2020-01-31 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1548787486007-ZI246BJF4GGABBL9O3IN/Press%2BConference%2BPhoto%2Bon%2BCapitol%2BSteps.jpg News https://www.alabamarare.org/resources daily 0.75 2019-01-29 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1548787674506-KAE7U7AJA4K4XKKWPO8G/image-asset.jpeg Resources https://www.alabamarare.org/policy-priorities daily 0.75 2020-09-08 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1548786585997-347E7HTT82YIEI17E60P/signs-resolution-for-february-28-to-be-rare-disease-day-in-alaba_39647444175_o.jpg Policy Priorities https://www.alabamarare.org/state-house-advocacy daily 0.75 2019-04-04 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1554399466846-EDEE60GXR38HF3VKW9SH/2019%2BState%2BHouse%2BSave%2Bthe%2BDate%2BFlyer.jpg State House Advocacy Event https://www.alabamarare.org/share-your-story daily 0.75 2023-11-09 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1583012903155-8UJ4PJDALDU7AD5P5SON/Brooke+Thomas+Profile.jpg Share Your Story https://www.alabamarare.org/contact-us daily 0.75 2020-02-29 https://www.alabamarare.org/newborn-screening daily 0.75 2024-05-02 https://www.alabamarare.org/rare-disease-sym-2021-speaker-bios daily 0.75 2021-02-21 https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1612209671391-1VZ4RGUDOVFD7PQ08JJG/About+Page+%287%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1613931277789-LNWQR2HW0E6HPE2OWO88/About+Page.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1613931360962-K18Z0RH8R8TMZR4B7URP/About+Page+%283%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1612209735625-ARENNS272UC75Z147WA2/About+Page+%285%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1612209694592-NAWMRDJYFJK6FRCVT4LT/About+Page+%284%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1612209789286-XVX4NN615WO10D13XCCY/SwapnaKakaniBio.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1612209650032-7J47B589C3ZE4CSQ9NVP/About+Page+%283%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1613931167901-W9YQK2DELAFX2IABHJC7/About+Page+%282%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1613931245961-1OOYP9VTYW64WNZREYRR/About+Page+%287%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1612209814441-XJ43N3G0AVGOEMQE3VX6/JoshNovakBio.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1613931210790-QFP0FF5BPYFVOSFAAJGU/About+Page+%286%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1612209758930-C2B1YMXMUARH1RNQ47A6/CraigTompsonBio+%289%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1612209562713-GHCFG8N1JAUWHVHU5BCE/About+Page+%282%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1613931310256-OUQ4TR37BE01YKHLR3L8/About+Page+%285%29.png Rare Disease Sym 2021 Speaker Bios https://images.squarespace-cdn.com/content/v1/5c098657697a988bd328ef59/1612209629879-GKBYP0LEQDC19T9HY5K2/About+Page+%286%29.png Rare Disease Sym 2021 Speaker Bios https://www.alabamarare.org/fridays-symposium-agenda daily 0.75 2021-02-02 https://www.alabamarare.org/saturdays-symposium-agenda daily 0.75 2021-02-20 https://www.alabamarare.org/outreach-partner-resources daily 0.75 2023-11-09 https://www.alabamarare.org/2022-symposium-agenda daily 0.75 2022-02-22