RareConnect

🌐Connecting #raredisease patients globally at 💻Website help at @RareConnectSup.

[RareConnect @RareConnect]

🔎 We're looking for people affected by any of these #rarediseases that would like to connect with others living with the same condition. Interested? Send us an email at [email protected] or visit:
https://t.co/NvWvOKvU9Q

Share this image and help us #BreakTheIsolation!

[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
👉https://t.co/34ndqOvnVV

[RareConnect @RareConnect]

Join #AuKlineSyndrome community to ask your questions and connect with other families living with Au-Kline syndrome across the world 👇
https://t.co/WuwDYfLTEt

[RareConnect @RareConnect]

Share what you have learned about #SpinocerebellarAtaxiaType29 as a caregiver. Share what you have been told by doctor. Share articles you feel might be worth reading or websites worth visiting:
https://t.co/2g0GxcEjDn

[RareConnect @RareConnect]

Join the RareConnect #TNFReceptorAssociatedPeriodicFeverSyndrome #TRAPS community to share experiences and discover your support network!
https://t.co/XIFLtSxXt1

[RareConnect @RareConnect]

🔎 Do you know someone living with #AdultOnsetVitelliformMacularDystrophy
#AVMD who would like to connect with another family affected by this #raredisease? Interested? Send us an email or visit:
https://t.co/NvWvOKeR7Q

[RareConnect @RareConnect]

#NephroticSyndrome families are waiting for you! Share your story & connect with others worldwide in the Nephrotic Syndrome community
👉https://t.co/zQ7LGVHYOL

[22Q11 Ireland @22Q11_Ireland]

@eurordis @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: https://t.co/KsWSVDAdEo

[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

[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:
https://t.co/pR91Zl1z93

[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: https://t.co/R1qvmbENDP

Latest programme with session timings here: https://t.co/FqTZ3hPqw2

#r20familyconference

[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 @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: https://t.co/lrFwzGHb4g

[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! https://t.co/WboDMZz6EN

[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 https://t.co/DKuyddTTfH

[RareConnect @RareConnect]

Create your team or join the GACI Global worldwide walk 👇

👉Join the #HereditaryRickets community:
https://t.co/G7BbxMT5AT

[Brighter Hope Foundation @thebrighterhope]

Patients and families affected by GACI and ARHR2 need your support. You can help by creating or joining a team, or by making a donation.

Donate/sign-up here: https://t.co/8vxiXNoiPu

#enpp1deficiency #abcc6deficiency #gaci #arhr2 #raredisease #WorldwideWalk @inozyme @sweatcoin

[RareConnect @RareConnect]

🔎 Do you know someone living with #HypotoniaInfantileWithPsychomotorRetardationAndCharacteristicFacies2 #IHPRF2 in the #UNC80gene who would like to connect with another family affected by this #raredisease? Interested? Send us an email or visit:
https://t.co/NvWvOKejii

[RareConnect @RareConnect]

🔎 Do you know someone living with #NecrobioticXanthogranuloma who would like to connect with another family affected by this #raredisease? Interested? Send us an email at [email protected] or visit:

+INFO 👉 https://t.co/NvWvOKeR7Q

#BreakTheIsolation

[SWAN UK (syndromes without a name) @SWAN_UK]

@RareConnect can you help us support undiagnosed families in the UK by sharing our survey? https://t.co/iuZGR01gaX

[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:
https://t.co/q7I9C8d3Fl

[Beacon for Rare Diseases @RareBeacon]

If you’re a researcher, healthcare professional, patient or patient group with experience in #DrugRepurposing for #RareDiseases, get in touch with [email protected] to discuss how we can share your journey at #DrugRepo22!

Learn more now!

https://t.co/uSJmvmfszP