Oct. 18, 2012
Posted at October 18, 2012 8:00 am
NORD’s Board Chair and President with Senator Hagan
Welcome to NORD’s new blog! We hope you will visit often and that you will join the conversation. Topics we’ll be covering in upcoming posts include:
- The approaching “budget cliff” and how it might impact rare disease patients
- Implementation of insurance reforms in the Affordable Care Act and of rare disease provisions in the FDA Safety and Innovation Act
- Innovative efforts by patients and patient organizations to encourage the development of treatments for rare diseases
- How to get involved in Rare Disease Day 2013
… and many more. We’ll cover “hard news” related to developments on Capitol Hill as well as the softer side of the news, with personal reflections from members of NORD’s staff and guest bloggers about their experiences with rare diseases.
Our posts will run the gamut from serious or sad to quirky reflections on our day-to-day experiences in the unpredictable world of nonprofit advocacy. Friends of NORD and guest bloggers will add spice to the mix. We anticipate a lively conversation.
We hope also to hear your voice in this conversation. Everyone is welcome. We have a few basic guidelines to ensure a civil, respectful discussion, but otherwise no topic is off-limits and all comments add to the richness of the dialogue.
Please visit us often. We anticipate posting new blogs several times each week. Suggestions for blog topics may be sent to us here.
7 Responses to Welcome to our blog!
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I hope see topics about how patients can be successful at getting their insurance company to cover treatments for rare diseases. I have seen and been referred to lots of programs for people needing financial help. That is not me. I want help educating the insurance companies.
Look forward to staying current with your new blog. Congratulations!!
Congratulations on your new blog! Looking forward to keeping up with the latest news and developments regarding rare diseases. Would love to see increased funding for research as a result of increased awareness of these devastating illnesses. All best wishes, Lynn
I am very excited about this new blog and look forward to current issues on rare disease news, awareness, legislation and patient voices.
It would be beneficial to educate patients and new patient organizations on the advocacy path including social media and international networks. Also education on pharm and biotech involvement for are diseases would be beneficial.
Thank you for this great effort.
Marianne
Great blog that I am sure will convey much needed information and be of great benefit to all members of NORD and the rare disease communities!
Thanks
I am excited to hear about this! I have Cowden’s Syndrome and Lhermitte-duclos which affects 1/200,000. I am going to list this on my blog in hopes to raise awareness for CS. Thank you!
Thanks for all the posts and emails about NORD’s new blog. We look forward to good conversations on a broad range of topics. Thanks, too, for posts such as this one on The Catalyst.