Trina

[Trina @Trina_Harris9]

@IcelandFoods Iceland Foods i placed a regular order and was expecting my delivery between 8 & 10am this morning. Then I get a message to say we couldn't deliver to your premises at 10.10am!! I tried to call the number that was given to find out what on earth is going on. Keep getting cut off

[Trina @Trina_Harris9]

@Lizzy93818 Legit?

[Trina @Trina_Harris9]

@BBCTheOneShow @KingsCollegeLon answers please for this dear lady! Shocking 😲

[Lucy Barns @lucybarns53]

@CliveKay I have been waiting over 6 months for a response to a formal complaint I made. The treatment I received at King's was appalling. I was sent home after 5 weeks as inpatient with potentially fatal injuries left untreated, and I would like some answers.

[Trina @Trina_Harris9]

🤍💙

[Trina @Trina_Harris9]

@hans_labyrinth Never feel alone. #family #love #here4u #Always xxxxxxxx

[Pemfriends UK @PemfriendsUk]

We hope to be there. This year in Glasgow was very good.

[Trina @Trina_Harris9]

@PemfriendsUk

[Simoney Kyriakou 🇨🇦 @MoorgateMermaid]

This is my amazing friend Trina who I love to bits. Living with pemphigus is terrifying at times. #24HoursInA&E

[St George's, Epsom and St Helier @geshNHS]

Did you know a brand-new series of #24HrsAE is continuing this Monday on @Channel4?

This week, an impressive 1.48 million of you tuned in to see #TeamStGeorges ED colleagues great work and powerful patient stories

See you again on Monday 12 Sept at 9pm on @Channel4 📺

[Pemfriends UK @PemfriendsUk]

Day 2 of the EADV CONGRESS 2022 and we're here and wearing the free sunglasses provided by our friends the IPPF.
Please come and see us.
Sun awareness is very important for those with skin diseases, including eye protection.
#AIBDs
#EADVCongress

[Pemfriends UK @PemfriendsUk]

Day 2 of the EADV CONGRESS 2022 and our magazine editor Trina has now joined our leader Isobel at our stand.
We rely completely on members of our PEM Council to spread the word.
We are not a charity but a patient support group and are all volunteers.
#AIBDs
#EADVCongress

[Pemfriends UK @PemfriendsUk]

Day 4 of the EADV Congress 2022 and Trina is ready to go bright and Early.
#EADVCongress
#AIBDs

[Pemfriends UK @PemfriendsUk]

Day 4 of the EADV Congress 2022.
Busy programme today but which to choose? 🤔
We think these.
We always want to learn and are always grateful for the opportunity. 😊
#EADVCongress
#AIBDs

[Pemfriends UK @PemfriendsUk]

So the EADV Congress 2022 is over. Thank you to Trina and Isobel and their husbands for representing us. Journeys there and back had many delays, but worth it.
We would also like to thank those people at EADV who gave us their condolences on the death of our Queen.
#EADVCongress

[Pemfriends UK @PemfriendsUk]

PEM Friends is a group supporting UK patients and carers with Pemphigoid or Pemphigus. We are a patient run group and rely on people to help us run things. Currently we are very short on manpower so are unable to run our account as we would wish but hope to be more active soon.

[Pemfriends UK @PemfriendsUk]

For UK viewers today on Channel 4 at the slightly revised time of 9.30pm.
Trina, editor of our PEM Lives magazine, will be on 24 Hours in A&E.
She had a severe flare of PV in her throat which caused her visit to A&E.
She agreed to take part as a chance to get PEM out there.

[Pemfriends UK @PemfriendsUk]

We enjoyed the #EADVCongress 2022. One of the best bits was the opportunity to talk to the other patient groups. Thank you GlobalSkin for your hospitality on talks, sharing best practice and the reception. Spoke to some great delegates, would have liked to speak to more of them.

[Trina @Trina_Harris9]

@JOSEFdeGUZMAN @PsoriasisIFPA @eadv @IADPO Thank you for sharing the pictures. We look forward to the outcomes of our workshop and making a difference to the lives of all patients suffering with their diseases. @PemfriendsUk @eadv @IADPO @MarcYale

[Trina @Trina_Harris9]

@PemfriendsUk

[josef @JOSEFdeGUZMAN]

How do we improve the patients' engagement at EADV?

@PsoriasisIFPA took part in the formation of the #EADV Task force: Patient Association Working group.

Thank you @eadv and @IADPO for this opportunity!

#EADVCongress
#EADV2022
#dermatology

[CMTC-OVM @CMTCOVM]

@eadv A great and intensive conference for 4 days!
We have established many new contacts and did meet again with many 'old' friends.
However, the location of the patient advocacy booth was not handy in the basement.
Aren't we all active on behalf of the patient?

[Pemfriends UK @PemfriendsUk]

We agree about the location of the Patient Advocacy area. It seems so easy to have the patient groups in a place where more delegates would pass by - where we could represent the important role the patient advocacy groups and the patients play.
Patients are what it's all about.