RareConnect

8.1K posts

RareConnect banner
RareConnect

RareConnect

@RareConnect

🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.

Barcelona, Catalonia เข้าร่วม Haziran 2011
4.7K กำลังติดตาม17.8K ผู้ติดตาม
RareConnect รีทวีตแล้ว
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
Newborn screening can detect rare diseases in asymptomatic newborns, allowing for the possibility of early treatment. This results in better long-term outcomes for people living with rare conditions. Read more 👉eurordis.org/our-priorities…
EURORDIS-Rare Diseases Europe tweet media
English
1
5
15
0
RareConnect
RareConnect@RareConnect·
September is #pulmonaryfibrosis awareness month! Join #PFMonth and their mission to support #pulmonaryfibrosis patients all over the world in their fight for better access to treatment and support!👇 ➡️Meet others in the PF community: rareconnect.org/en/community/i…
EU-PFF@EU_IPFF

These are the 7 common types of #PF: - Idiopathic Pulmonary Fibrosis - Non-Specific Interstitial Pneumonia - Chronic Hypersensitivity Pneumonitis - Rheumatoid Arthritis ILD - Scleroderma ILD - Fibrotic sarcoidosis - Unclassifiable ILD #PFMonth #pulmonaryfibrosis #BreathingLife

English
0
0
1
0
RareConnect
RareConnect@RareConnect·
Register for the upcoming Ring20 Families Conference to hear about the latest on research, treatments, and patient stories. A unique chance to meet other r(20) families. 👇 ➡️ Connect with others globally in the Ring Chromosome 20 Syndrome community: rareconnect.org/en/community/r…
Ring20UK@Ring20UK

Our Ring20 Families Conference 2022 has gone HYBRID! We have lots of information to share with our focus on new research opportunities for r(20) syndrome. REGISTER: qrco.de/ring20fc22 Latest programme with session timings here: #FC22program" target="_blank" rel="nofollow noopener">ring20researchsupport.co.uk/for-families/f… #r20familyconference

English
0
0
1
0
RareConnect รีทวีตแล้ว
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
Today, we are starting Newborn 👶 Screening Awareness month! Do you want to learn more? Every Thursday in September, we will share our work on Newborn Screening! #NewbornScreeningAwarenessMonth
EURORDIS-Rare Diseases Europe tweet media
English
2
13
30
0
RareConnect รีทวีตแล้ว
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
More than 650 Ukrainian families living with a rare disease benefited from various kinds of support thanks to a series of emergency grants distributed to Ukrainian, Polish and Romanian patient organisations throughout March-April 2022. 👉 Learn more: eurordis.org/eurordis-ukrai…
EURORDIS-Rare Diseases Europe tweet media
English
0
3
16
0
RareConnect รีทวีตแล้ว
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
❓ Could you be our next awardee? The EURORDIS Leadership Award celebrates individuals whose outstanding advocacy work 💪 has benefited the rare disease community by educating stakeholders or by affecting legislation. ✅ Submit a nomination now! blackpearl.eurordis.org/nominate/
EURORDIS-Rare Diseases Europe tweet media
English
0
3
7
0
RareConnect รีทวีตแล้ว
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
🗣️How can the EU foster coordination on and solidarity for #rarediseases? @EU_EESC will hold a public hearing to gather input on "Ensuring strong European solidarity for rare disease patients". 🗓️Tomorrow 🕘9:30 am CET Register and listen here cutt.ly/iX6qst1
EURORDIS-Rare Diseases Europe tweet media
English
2
4
8
0
RareConnect รีทวีตแล้ว
APARDO
APARDO@APARDO_official·
We invite everyone to our online event where we discuss and learn more about Gene Therapy with our guest speaker Dr. Saumya Jamuar 📅 October 3, 2022 - 9:00AM SGT 📍 Online Event via Zoom Register Now Here: us02web.zoom.us/meeting/regist…
APARDO tweet media
English
0
2
4
0

ค้นพบ

@eurordis @EU_EESC @elonmusk @BarackObama @taylorswift13 @cristiano @BillGates @NASA