The NDF Community Shines Around the World!
Highlights on initiatives taking place as part of Rare Disease Day 2022.

As we approach Rare Disease Day (February 28, 2022), we want to take a moment and share some great initiatives that are taking place around the world, and that are being led by NDF's partners, supporters and advocates!

TOGETHER AGAINST GENETIC RARE DISEASE IN IVORY COAST
NDF's very own Certified Patient Advocate Okoma Marie Rose has been leading the way on the Ivory Coast when it comes to supporting GNEM patients and screening the at-risk population.

Rose has created a very impressive hybrid program for Rare Disease Day which includes free screenings, free consultations, online events and lectures, a medical symposium and more.

The Rare Disease Week program can be downloaded here, more information can be found on the Aux Pas Du Coeur website.
The website is available in French, English and Italian.
PATIENT ADVOCACY PROGRAM MANAGER TARA VOOGEL FEATURED ON THE OFFICIAL RARE DISEASE DAY CAMPAIGN
We are delighted to share that Tara's story was selected to be featured on the official Rare Disease Day website. Tara's positive attitude, her selflessness and her willingness to help others is truly an inspiration to us all. We are honored to have her part of our organization as a wonderful Patient Advocacy Program Manager.
RARE DISEASES: NOT SO RARE 
Patient Advocacy Program Manager, Maya Davidovich will give a talk at the eighth annual International Rare Disease Day online conference ‘Rare Disease, Not So Rare’ in Israel on February 28, 2022.

This is the first time that GNEM and the Neuromuscular Disease Foundation will be discussed at this event. We are very proud of the wonderful work Maya has been doing and we can't wait to hear her speak.

To sign up, please click here.
LET'S MEET OUR FRIEND TARA
To our Turkish speaking friends with GNE Myopathy from all countries we invite you to our online meeting which will be on 27/02/2022 at 20:00 Turkish time.  

Our friend Tara Voogel, who lives in America will tell us about her 30-year life journey and experiences living with GNE Myopathy. We will organize the meeting by opening a room on our private Facebook group. 

The Facebook link can be found here. You do not need to register in advance, please be present on our Facebook group 5 minutes before the meeting and we will admit you. We hope to see you at the specified date and time. 
Arkadaşımız TARA ile buluşalım
Tüm ülkelerden Türkçe konuşan Gne Miyopatili arkadaşlarımızın dikkatine. Sizleri 27/02/2022 tarihinde Türkiye saati ile akşam saat 20:00 de düzenleyeceğimiz online toplantımıza davet ediyoruz. Amerika'da yaşayan arkadaşımız Tara Voogel, bizlere Gne Miyopati ile olan yaklaşık 30 yıllık hayat yolculuğunu ve deneyimlerini anlatacak . Toplantıyı aşağıda linki verilen Facebook grubumuzda , Messengerda oda açarak düzenleyeceğiz. Önceden kayıt olmanıza gerek olmayıp toplantıdan 5 dakika önce facebook grubumuzda hazır bulunmanız yeterlidir. Belirtilen tarih ve saatte görüşmek dileği ile.
RARE REVOLUTION MAGAZINE SHARES NEWS ABOUT NDF
Thank you RARE Revolution Magazine for getting the word out! We’re honored to be the leading global force in the international research effort that will end GNEM!
Thank you to Herald Health for spreading the word to an international audience about our IGTDP! We are excited to be fast tracking the path to the treatment that will end GNEM!

HAVE YOU REQUESTED YOUR RDD FRAME PICTURE YET?
Receive your own Rare Disease Day custom graphic by sending us your picture via email & choosing a profile graphic or one for general posting. This initiative comes from the Patient Advocacy Program Managers (PAPM).
Change your profile photo with this NDF custom Rare Disease Day frame. Email us your picture and we will email it back framed and ready to share on social media!
Show your support of NDF and Rare Disease Day with this custom graphic to show in your feed. Email us your picture and we will create the post for you!
NORD: OFFICIAL PARTNER OF
RARE DISEASE DAY
The National Organization for Rare Disorders (NORD) is proud to be the official US partner for Rare Disease Day. We work with our sister organization EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international campaign that shines a light on rare diseases and advocates for health equity for all those living with a rare disease. Visit the international Rare Disease Day site for additional information and resources at rarediseaseday.org.

On this site you can find ways to get involved in events and activities taking place across the United States.
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