Happy New Year! We took a break in January but it's back to the races!
February is a busy month as we celebrate International Epilepsy Awareness Day Feb. 14 and Rare Disease Day on February 28th. It's also Black History month which raise the intersectionality of the challenge when historically underserved communities are also diagnosed with rare disease. Programming by our partners EF and NORD below.
We hope all REN MEMBERS will regularly use the hashtag #RareEpilepsies as you post across your channels to strengthen our common cause. Many members also celebrate their awareness days this month and we wish you success in your campaigns. Tag REN on Twitter and we will like and retweet - https://twitter.com/RareEpilepsy
Check out research by Dr. Shellhaas' Lab (U. MI) on sleep disturbances incorporating data from REN's registry below. Seeing trends in the marketplace toward aquisition and collaboration across companies with interests in rare epilepsies. A top read for the month is Dr. Scheffer's article "Lightning Progress in Child Neurology in the Past 20 Years" in the Lancet (link below).
REN recently welcomed 4 new groups to our community including: Malan Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics (FAST), CMCD Foundation, and KCNC1 Foundation. Our email has been busy with inquiries regarding GPAA1, DESSH, and Cri Du Chat. And our list-serve has seen threads around hiring Research Directors, finding funding, and more. Thank you to our friends at Angelman Syndrome Foundation for sharing the State By State Insurance Guide (link below). This will be quite helpful to our Members and their families.
A reminder - REN's newsletter is publicly available and anyone can sign up to receive it. Our list-serve is reserved for REN Members and Partners only.
With gratitude,
The REN Coordinating Committee
PS. REN MEMBERS be sure to save the date for February 28 @ 1 PM ET - our next membership meeting.
