The Alabama Rare Disease community has come together to host a special week in honor of the upcoming date February 28th, 2018, which is now the official International Rare Disease Day in Alabama. The community is using this special day to bring continued awareness, as well as educate, advice and give patients, caretakers, families, and medical professionals all the tools they need to successfully tackle the challenges with rare disease. They hope positivity will radiate upon the rare disease community from the events, and everyone will come out of the week STRONGER and HEARD by those within the community and those on the outside.
They have two amazing events coming up that are completely free to patients, caretakers and families. There is only a small registration fee for medical professionals and others who are not directly affected by rare diseases.
If you need community support being affected by a rare disease, or if you just want to educate yourself, do not hesitate to RSVP and attend either of the events listed below:
Rare Disease Symposium
This event will focus on educating and advising patients/caregivers on rare disease management.
WHEN: Friday, March 2nd – 8A-4P & Saturday, March 3rd – 9A-1P
WHERE: Bradley Lecture Center – Children’s of Alabama
RSVP: Email [email protected] by Monday, February 12th
Rare Disease Day Advocacy Training & State House Advocacy Event
This event is focused on connected state legislators to advocates.
WHEN: Tuesday, March 6th – 2P-5P & Wednesday, March 7th – 8A-3P
WHERE: March 6th & March 7th – 6th Floor Lobby of Alabama State House, Montgomery Alabama
RSVP: Email [email protected] with your name, county, rare disease and state legislators names. If you need to locate your state legislators, please go HERE.
Here is the registration link for the symposium: https://www.childrensal.org/genetics
You can also watch the TEDx Talk!
