Patient Support Group. Registered Charity. Supporting patients, families and professionals dealing with Thrombotic Thrombocytopenic Purpura in UK and Eire.
England, United Kingdom
Joined January 2014
- Tweets325
- Following103
- Followers253
- Likes157
TTP Network retweeted
Patient Partnership Week is back for 2026! Together patients, professionals and policymakers will explore a simple but powerful idea: healthcare works best when patients are treated as partners.
Take a look and sign up, more to follow! #PPW2026
buff.ly/qanvAGs
TTP Network retweeted
I'm fundraising for the @TTP_Network โฃ๏ธ
Check out my @JustGiving page and please donate if you can. Thank you!
#JustGiving #TTP #TTPNETWORK
justgiving.com/page/matty-jaโฆ โ at Grasmere, England
TTP Network retweeted
We're proud to announce the recipients of the #ISTH2023 Esteemed Career Awards: Robert Andrews, Ph.D.; Ampaiwan Chuansumrit, M.D.; Maureane Hoffman, M.D., Ph.D.; Menno Huisman, M.D., Ph.D; Marie Scully, M.D. isthcongressdaily.org/articlโฆ
TTP Network retweeted
The SHOT team would like to wish all blood donors a happy #WorldBloodDonorDay ๐
You are amazing and save lives every day! ๐
We are so grateful that you "Give blood, give plasma, share life, share often" โค
#WHO #BloodDonation @NHSBT @givebloodscot @WelshBlood @GiveBloodNI
TTP Network retweeted
This website plus the link below can help with supporting you when travelling with #TTP #TTPAston23 @TTP_Network Please check your documents on return from the insurers to ensure they've accurately recorded your diagnosis. ttpnetwork.org.uk/travel-traโฆ
TTP Network retweeted
If you would like to volunteer to help with @TTP_Network with their events or social media or enrol in the buddy system for others who have #TTP drop them an email at the below addresses #TTPAston23
TTP Network retweeted
Congratulations to the team @TTP_Network for the amazing day today in Birmingham. 25 years since Jo first wrote to @WomanMagazine to ask if anyone else out there had experienced #TTP. What a difference the group has made to so many, preventing isolation #RareDisease #TTPAston23
TTP Network retweeted
The ConNeCT study (single site) findings reveal that less than 50% of people with #TTP registered were able to return to the same employment they were in pre diagnosis. Revealing the importance of social support within the MDT @HaemSTAR_UK @NIHR #TTPAston23 @TTP_Network
TTP Network retweeted
ConNeCT study reveals that individuals with #TTP are at a statistically higher risk of poor emotional health & depression. This was reflected in patient feedback today & shows the importance of #psychology involvement and a holistic approach to care #TTPAston23 @TTP_Network
TTP Network retweeted
We've heard from patients and families about how isolating acquired & congenital #TTP #rarediseases can be & the role that the patient organisation play in supporting & connecting affected families @TTP_Network #TTPAston23
TTP Network retweeted
Congenital #TTP can present at any number of points in life including #neonate, #postviral, during or post #pregnancy but is extremely rare 1:1,000,000 #TTPAston23 @TTP_Network #RareDisease
TTP Network retweeted
Are you affected by #TTP? Join @TTP_Network in May @ConferenceAston in #Birmingham to meet others like you & healthcare professionals working in the field. Looking forward to it
TTP Network retweeted
TTPNetwork and FEDHEMO: supporting patients with thrombotic thrombocytopenic purpura (TTP).
We met with Jo from @TTP_Network and Daniel from @fedhemo to find out how they support those living with both #TTP and #aTTP
rarerevolutionmagazine.com/dโฆ @sanofi
TTP Network retweeted
4/6
This work supports improving access to out-of-hours ADAMTS13 testing to enable earlier diagnosis in cases where there is uncertainty. We are told to start PEX before ADAMTS13 results are back but clearly this is not reflective of the realities of practice and tricky diagnoses
TTP Network retweeted
3/6
Only 65% patients received plasma exchange within 24h of presentation with the cause of delays being diagnostic uncertainty because of older age, higher Hb (>100g/l) & platelets (>30x10^9/l), and absence of RBC fragments on blood film. Lack of on-site PEX also contributed.
TTP Network retweeted
2/6
We audited practice against @BritSocHaem guidelines (onlinelibrary.wiley.com/doi/โฆ) and gathered data on 251 patients with #TTP across 80 sites thanks to 148 cited collaborators. WOW!!!
TTP Network retweeted
1/6
YESSSS!!!
Our second ever Flash Mob project is now published and is Open Access in @JTHjournal. In the largest ever, multicentre study of time to treatment in #TTP we found that diagnostic uncertainty was the most frequent reason for treatment delay. onlinelibrary.wiley.com/doi/โฆ
TTP Network retweeted
That's it from @TTP_Network. Massive thanks to @GeneticAll_UK and @RareDiseaseUK for the opportunity to share our message. If you have been affected by #TTP and want to find more people like you visit TTPNetwork.org.uk or our Facebook page #rarediseaseday JW
