Alert: For WEDNESDAY - Fraser & Graham, Co-Chairs of #PatientGroup invite the patients at #StreathamHillGroupPractice to attend our Xmas Meeting - please arrive promptly as we have an action packed interesting & informative agenda.
#PG #SHGP #StreathamHillGP #PPG Keep Our NHS Public
'Happy #TuesdayTakeover ! We're Chelsea's Hope Lafora Children Research Fund, a #PatientGroup dedicated to improving the lives of those affected by #LaforaDisease & accelerating the development of treatments. chelseashope.org
🦋 song by Lafora Initiative '
BSI Clinical Immunology Professional Network Steering Group:
Dr Emma Callery Chorley & Royal Preston – #HealthcareScientist Representative
Dr Leman Mutlu Leman Mutlu – #PatientGroup Liaison
Dr James Thaventhiran James Thaventhiran – Conference Programme Lead
5/6 🧵
This week, we're hosting a regional group for BC alongside our national group for families & caregivers!
Registration is required to attend; please register through the events page on our website.
#immunodeficiency #immunedeficiency #ThinkZebras #patientgroup #patientsupport
This week, we're hosting the Older Adults (65+) and National CommUnity Connect Groups!
Registration is required to attend, please register through the events page on our website.
#immunodeficiency #immunedeficiency #primaryimmunodeficiency #ThinkZebras #patientgroup
Are you passionate about working with patient groups to improve care in #immunology ? We're looking for a #PatientGroup Liaison to join our Steering Group!
Find out about eligibility at bit.ly/43p2Hzd & submit a nomination via the #BSIcommittee portal by next Friday 📩
Is your #RareDisease awareness day coming up soon? Book your patient group for our #TuesdayTakeover this year.
Please email [email protected] for more information
#PatientAdvocacy #Genetics #PatientStory #Charity #Health #PatientGroup
📢 Nominations are now open for 3 positions on our Steering Group!
🔸 Conference Programme Lead
🔸 #HealthcareScientist Representative
🔸 #PatientGroup Liaison Representative
BSI-CIPN members, find out more & submit your nomination ➡️bit.ly/4bDeG1e #BSIcommittee
This week we're all about Alberta!
Registration is required to attend, please register here: us06web.zoom.us/meeting/regist…
#immunodeficiency #immunedeficiency #primaryimmunodeficiency #ThinkZebras #patientgroup #patientsupport
Calling all #clinical #immunologists !
Help shape the future of the sector & stand for a role on our BSI Clinical Immunology Professional Network Steering Group:
🔸 Conference Programme Lead
🔸 #HealthcareScientist Representative
🔸 #PatientGroup Liaison
Join a #BSIcommittee ➡️bit.ly/4bDeG1e
This week we've been opening up our Creative Time group to our colleagues. Our hope is that our Hospice teams learn more about the sessions and how they benefit our patients, by taking a creative break and seeing for themselves ! 🎨💐 #patientgroup #creativetime
Happy New Year.
Let’s see what 2024 is going to bring.
Refresh and Push. Keep pushing.
Do the right thing.
Together.
#patientgroup #patientpower
D.Dave Crypto_zoologist Ⓥ 52% of patients that stay ill after a year or so, qualify for MECFS. This is the image in our patientgroup for kids and adults. PEM and POTS. It is suggested by recent study of Scheibenbogen. I think LongCovid as a PAIS can develop into ME. Many PAIS’s like this;
The NCBRS Worldwide Foundation - Nicolaides Baraitser formed the first SAB for #NCBRS to advocate for scientific research that advances medical knowledge and treatments. Learn more: ncbrs-worldwide-foundation.weebly.com/research-scien… #NCBRS Rare #RareDiseaseDay #RDD 2024 #RDD #RareDiseaseDay 2024 #PatientGroup 🧡💚💙 NCBRS Worldwide Foundation - Nicolaides Baraitser
#NCBRS is a rare genetic condition caused by a mutation in the SMARCA2 gene on chromosome 9. Currently there are fewer than 300 known to us. Learn more at: ncbrs-worldwide-foundation.weebly.com/what-is-ncbrs #NCBRS Rare #RareDiseaseDay #RDD 2024 #RDD #RareDiseaseDay 2024 #PatientGroup 🧡💚💙
NCBRS Worldwide Foundation - Nicolaides Baraitser
'Find out more about what neuroacanthocytosis (NA) syndromes are and how they manifest.
#neuroacanthocytosis #vps13a #xkdisease #RareDiseaseDay 2024 #RareDiseaseDay #RDD 2024 #RDD #PatientAdvocacy #PatientGroup #DigitalMagazine '
Advocacy for Neuroacanthocytosis Patients
Ingredients of a successful patient group...
A practice patient group must have six essential elements to be effective and sustainable.
Find out what they are by downloading the guide: ow.ly/3fbV50QczTY
#PPG #patientgroup #primarycare #patientengagement #GP
📢 Calling all BSI-CIPN members!
LAST CHANCE to put your name forward for a role on our Steering Group:
🔸 Conference Programme Lead
🔸 #HealthcareScientist Representative
🔸 #PatientGroup Liaison
Don't miss out on the chance to join a #BSIcommittee ! ⏰ 17:00 GMT ⏰
#GlobalNCBRSAwarenessDay is celebrated on October 9th each year. Help us raise awareness by heading to our website for ways in which you can get involved: ncbrs-worldwide-foundation.weebly.com/awareness-day #NCBRS #NCBRS Rare #RareDiseaseDay #RareDiseaseDay 2024 #RDD #PatientGroup 🧡💚💙 NCBRS Worldwide Foundation - Nicolaides Baraitser
