We are resuming our Webinar series on #rarediseases.
Next Tuesday, we will hear about the @BostonChildrens node of @RareDiseases (NORD)
Speaker: Prof Olaf Bodamer
Day: Tuesday 14th
Time: 8:00 p.m WAT (UT+1)
Translation available for French speakers.
Link: us06web.zoom.us/j/85634300277?…
0
1
3
347
"Alone we are rare, together we are strong. The NORD Rare Disease Center of Excellence Network"

The webinar will focus on the NORD Rare Disease Center of Excellence Network. The speaker will be Professor Olaf Bodamer and the moderator, Professor AIME LUMAKA
#UDNI
Join us !!
0
2
3
269
Great event !! To be continued.
See you all in Tiblisi (Georgia) in October 22-23 for the 12th #UDNI Conference.
#undiagnosedhackathon
#rarediseases
@UDNIss
@WilhelmFound
The 1st #undiagnosedhackathon was a great success with finale of Coat of Arms designed by the participants from Japan! Looking forward to seeing all in Georgia in October 22-23 for the 12th #UDNI meeting, registration link will be opened soon @WilhelmFound @UDNIss #raredisease
0
2
13
410
Udninternational retweeted
🎗Oggi è la giornata della #SindromediWilliams, una malattia genetica rara

🎶Chi ne è colpito è caratterizzato da specifiche peculiarità fisiche, ma anche linguistiche e neuropsicologiche, tra cui la predisposizione naturale alla #musica, usata per terapie riabilitative
2
15
31
2,936
Towards the international interoperability of clinical research networks for rare diseases: recommendations from th… pubmed.ncbi.nlm.nih.gov/37161573/
0
0
1
108
Intl Summer School #RareDisease #Registries & #FAIRification of #data #Rome, Sept 25-29 2023 Registration OPEN till May 22👉 bit.ly/3GFmjpS Info & Programme bit.ly/3KXhFGq
@istsupsan
@EJPRareDiseases
#ePAGs #ePAGItalia #ERNeu #UNIAMO #EURORDIS
@ClaudioCarta_4
0
2
4
515
TODAY
April 29 #UndiagnosedDay (at 13.30 CET, Rome time)
organized by #UDNI & #WilhelmFoundation
We are pleased to invite you to participate to the webinar. "Leaving no one behind"
To follow the event: undiagnosed-day.org
0
5
6
560
- 1
April 29 #UndiagnosedDay
organized by #UDNI & #WilhelmFoundation
We are pleased to invite you to the webinar.
Leaving no one behind
More undiagnosed-day.org
udninternational.org
wilhelmfoundation.org
#rarediseases
#UndiagnosedChildrensDay2023
0
6
13
346
- 1
April 29 #UndiagnosedDay
organized by #UDNI & #WilhelmFoundation
We are pleased to invite you to participate to the webinar
Leaving no one behind
More at undiagnosed-day.org
UDNI udninternational.org
Wilhelm Foundation wilhelmfoundation.org
#rarediseases
#Undiagnosed
0
3
2
213
April 29 #undiagnosedDayorganized by UDNI & @WilhelmFoundation We are pleased to invite you to participate to the webinar.
More info at undiagnosed-day.org
0
4
6
408
29 April 2023
Undiagnosed Day 2023 by #UDNI & #Wilhelm Foundation
"All Undiagnosed should have a chance to get a diagnosis".
"Leaving no one behind"
More info undiagnosed-day.org
#UDNI udninternational.org
#rarediseases
#Undiagnosed
0
2
4
259
The NATIONAL ORGANIZATION FOR RARE
DISORDERS (NORD) Center of Excellence at Boston Children’s Hospital. (Speaker: Olaf Bodamer)
More information: tinyurl.com/2p8t9j4v
0
0
1
75
RARE DISEASE GRAND ROUNDS:
"RARE DISEASES: EUROPEAN AND ITALIAN
POLICIES AND ACTIONS" (Speaker: Domenica Taruscio)
More information tinyurl.com/4cu85zva
0
0
1
54
RARE DISEASE GRAND ROUNDS
"SUPPORTING THE ZEBRAS: AN AUSTRALIAN APPROACH TO PERSONCENTRED RARE DISEASE CARE" (Speaker: Emma Palmer)
More information tinyurl.com/bd88fbpw
0
0
2
97
As member of UDNI and President of ICORD (icord.es) I am honored to invite you to attend the free Webinar HOW CAN ONE HEALTH APPROACHES HELP RARE DISEASES?
Link for registration lnkd.in/dP_zMNpG
Program is here lnkd.in/dAEAneHM
0
1
3
152
#
Join @EJPRareDiseases in Rome for a 3-day training to get instruments and knowledge on novel strategies to foster solutions of undiagnosed #RareDiseases cases
🚨Registration deadline: 15 February
ℹ️Programme, registration & more information: ejprarediseases.org/event/training…
0
1
1
109
Udninternational retweeted
Join @EJPRareDiseases in Rome for a 3-day training to get instruments and knowledge on novel strategies to foster solutions of undiagnosed #RareDiseases cases
🚨Registration deadline: 15 February
ℹ️Programme, registration & more information: ejprarediseases.org/event/training…
1
9
15
1,333
#EJPRD "#Training on strategies to foster solutions of #undiagnosed #RareDisease cases"
3-5 April 2023 in person at @istsupsan
See you in #Rome ❗
For the #EJPRD "#Training on strategies to foster solutions of #undiagnosed #RareDisease cases"
3-5 April 2023 in person at @istsupsan

REGISTRATION OPEN until February 15, 2023
👉bit.ly/3H0hI2e

Programme & Info bit.ly/3vYNqXe

#malattierare
0
1
1
115
REGISTRATION IS OPEN
#EJPRD "#Training on strategies to foster solutions of #undiagnosed #RareDisease cases"
3-5 April 2023 in person at @istsupsan
#EJPRD "#Training on strategies to foster solutions of #undiagnosed #RareDisease cases"
3-5 April 2023 in person at @istsupsan
@ClaudioCarta_4

#rarediseases
0
0
0
90
14th #ICORD #Conference: registration open!!
A Community Partnership to Expand Access to Gene and Cell Therapies
More at
icord.es/14th-icord-con…
14th #ICORD #Conference: registration open!!
#Gene and #Cell #Therapies: #Hope and #Realities of #Advances in #Regenerative #Medicine
A Community Partnership to Expand Access to Gene and Cell Therapies
icord.es/14th-icord-con…
0
0
0
65