Sign up to save your podcasts
Or
Share Episode 7: Advocacy, Rare Disease Day, & a Giveaway!
Share to email
Share to Facebook
Share to X
Share to email
Share to Facebook
Share to X
Or
Episode 7: Advocacy, Rare Disease Day, & a Giveaway!
How familiar are you with rare disease advocacy? In episode 7 we talk about how advocacy impacts drug development as well as how it impacts the social systems our children are a part of. We share ways to get involved with organizations that champion rare diseases and encourage you to get out there and share your challenges and needs with those who can make a difference. We also share about a Rare Disease Day giveaway we are running all month long!
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:
Rare Disease Day Official Site
NORD Rare Action Networks By State
CDKL5 Home Video Study
Telethon Kids Team - CDKL5 Database
Ztalmy (Ganaxolone) approved for CDD
CDKL5 Centers of Excellence in the US
CDKL5 in Color Shop (Candles, Shirts, Mugs, Bags, etc!)
Sign Up For Our Newsletter!
Leave Us a Voice Message!
RESOURCES:
FDA-NIH Rare Disease Day
Rare Disease Legislative Advocates (RDLA) Advocacy Tip Sheets
Rare Disease Week on Capitol Hill
Join NORD’s Policy and Advocacy Taskforce!
NORD EDU - Free Advocacy Courses
GIVEAWAY ENTRY CRITERIA:
Help us spread awareness of CDKL5 in Color and you’ll have a chance to win a beautiful “CDKL5 - Illuminate Hope” candle in the design of your choice! Either CDKL5 green & epilepsy purple design OR CDKL5 rare zebra print design.
A perfect way to light it up for CDKL5 on Rare Disease Day or during June awareness month!
How to enter:
Follow us on either Facebook or Instagram
Like the giveaway post (Feb 1)
Tag a friend who should listen to our podcast (each tag = 1 entry)
BONUS: 3 entries for signing up for our newsletter!
BONUS: 3 entries for writing a review on Apple Podcasts or our Facebook page!
Entries must be in by February 27, 2025. We will pick one Facebook winner and one Instagram winner on Rare Disease Day February 28, 2025. Thanks for participating and helping us increase our reach!
*Shipping only to US addresses
View all episodes
By Marissa BishopHow familiar are you with rare disease advocacy? In episode 7 we talk about how advocacy impacts drug development as well as how it impacts the social systems our children are a part of. We share ways to get involved with organizations that champion rare diseases and encourage you to get out there and share your challenges and needs with those who can make a difference. We also share about a Rare Disease Day giveaway we are running all month long!
SHOW NOTES
Check out our website and sign up for our quarterly newsletter at www.CDKL5inColor.com
Follow us @CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube!
Email us to be on the show! [email protected]
MENTIONED IN THE EPISODE:
Rare Disease Day Official Site
NORD Rare Action Networks By State
CDKL5 Home Video Study
Telethon Kids Team - CDKL5 Database
Ztalmy (Ganaxolone) approved for CDD
CDKL5 Centers of Excellence in the US
CDKL5 in Color Shop (Candles, Shirts, Mugs, Bags, etc!)
Sign Up For Our Newsletter!
Leave Us a Voice Message!
RESOURCES:
FDA-NIH Rare Disease Day
Rare Disease Legislative Advocates (RDLA) Advocacy Tip Sheets
Rare Disease Week on Capitol Hill
Join NORD’s Policy and Advocacy Taskforce!
NORD EDU - Free Advocacy Courses
GIVEAWAY ENTRY CRITERIA:
Help us spread awareness of CDKL5 in Color and you’ll have a chance to win a beautiful “CDKL5 - Illuminate Hope” candle in the design of your choice! Either CDKL5 green & epilepsy purple design OR CDKL5 rare zebra print design.
A perfect way to light it up for CDKL5 on Rare Disease Day or during June awareness month!
How to enter:
Follow us on either Facebook or Instagram
Like the giveaway post (Feb 1)
Tag a friend who should listen to our podcast (each tag = 1 entry)
BONUS: 3 entries for signing up for our newsletter!
BONUS: 3 entries for writing a review on Apple Podcasts or our Facebook page!
Entries must be in by February 27, 2025. We will pick one Facebook winner and one Instagram winner on Rare Disease Day February 28, 2025. Thanks for participating and helping us increase our reach!
*Shipping only to US addresses