Advocacy doesn't come naturally for many of us, and yet it is an important skill to develop if your child lives with a rare disease like CDKL5 Deficiency Disorder.What is Rare Disease Advocacy?
The goal of rare disease advocacy is to improve the lives of those living with rare diseases, irrespective of the unique disease state. Luckily, rare disease advocacy is well coordinated and strong in the United States. The leading advocacy organizations' efforts are bolstered by the support of smaller patient advocacy groups who sign on to letters of importance or take action when recruited. It's an easy way for smaller groups to engage in advocacy.
Here are two leading rare advocacy organizations to know:
- National Organization for Rare Disorders (NORD) - You can join NORD's Rare Action Network and be connected with advocates in your home state, as well as be informed about important advocacy calls to action.
- Everylife Foundation - Their Rare Disease Legislative Advocates program provides resources, tools, mentoring, and hosts events specifically designed to empower rare disease advocacy.
If rare disease advocacy is of interest to you, go ahead and sign up for their newsletters and start to get informed about the work being done!
Disability Advocacy is Important Too
Our children rely on public systems throughout their lives. From Early Intervention to special education, community-living and life in adulthood, decisions made by our government officials have a direct impact on families like ours.
Being aware of advocacy at the local, state, and federal levels that impacts budgets and programs is critical and your voice can truly make a difference.
National organizations like Little Lobbyists, the Arc, and the National Council on Disability as well as state-specific group (find yours where you live) are working to make sure families like ours have their needs and challenges seen and heard. They need you on board, so reach out!
What about CDKL5 Advocacy?
CDKL5-specific advocacy is needed to attract industry and research interest in our disease, and patients play a critical role. However, how to get involved is not always clear.
It's a good idea to ask questions about the current advocacy landscape and investigate what goals are being worked on to bring new treatments to CDKL5. This type of advocacy takes a deliberate and coordinated approach, and our community can always benefit from new voices - particularly those who have applicable professional skills to offer.
Want to educate yourself on the drug development process? NORD offers a free, self-paced course entitled Rare Disease Drug Development: What Patients and Advocates Need to Know that you can check out!
We are collecting your questions and thoughts about CDKL5 advocacy. You can leave us a voice recording on our website or send us an email any time.
Advocacy at Home
Advocacy isn't limited to public testimony. CDKL5 parents advocate every single day for their children. It happens at the doctor's office, with the school system, and in the community when we are out-and-about in environments that aren't always inclusive or accessible.
Daniel DeFabio of The Disorder Channel says it best in his article The 8 Stages of Rare Disease Advocacy:
I want to tell you every type of advocacy on this list is equally worthy. We each do what we can do as it is needed of us. We learn as we go. We may not even realize that advocacy is what we are doing.
Even something as simple as using one of our new #CDKL5Awareness profile photo frames and posting on social media can go a long way to informing your followers of our cause. Not only that, it also helps our CDKL5 community feel more connected to one another - and that is special!
However you advocate, you are making a difference for people living with CDKL5 deficiency disorder and you are appreciated!
Be sure to sign up for our quarterly newsletter for opportunities to get involved with us as we advocate for CDKL5!
Until next time 💚
Like this blog? Tell your friends!
Be sure to check out our podcast and follow us on social media!
@CDKL5inColor on Instagram, Facebook, LinkedIn, Blue Sky, & YouTube
www.CDKL5inColor.com
--------------------------------------------
Disclaimer: CDKL5 in Color (podcast, website, blog, text and visual content, social media, and other creative works) constitutes lived experience and is not intended as medical advice. Always consult your doctor.
Comments
Post a Comment