Phaeo Para Support UK

04/09/2025

Good luck to our two runners in this Sundays Great North Run. Carly and Martin are taking on the worlds biggest half marathon and raising funds for AMEND.

They will be joining 60,000 other runners on the 13.1-mile journey from Newcastle upon Tyne to the stunning South Shields coastline.

Best of luck from all of us at AMEND, we hope you enjoy the day and can’t wait to hear how it goes.

If anyone would like to sponsor Carly and Martin and hear a little bit more about why they are running here is a link to their fundraising page:
https://www.totalgiving.co.uk/mypage/carlymartin

🏃‍♀️🏃‍♂️👟🎽🤞

03/09/2025

Our next in person peer support meeting is being held on Saturday 27th September from 12– 2pm at The Curious Cow, Killinghall, Harrogate, HG3 2AP

Join our volunteer, Emily for 2 hours of informal discussion and peer support. These meetings are very informal and supportive. Anyone affected by MEN or PPGL syndromes can attend. Patients, family, carers, friends – all are welcome!

One recent attendee of a peer support meeting said, “Amazing to get the chance to talk to people about my daughter’s condition and get some real-life answers from them. Really well ran by the volunteers and everyone was included in the discussions”.
Why not come along and meet others who know how you feel?

Please register for the meeting using the following link.
https://www.amend.org.uk/patients/amend-support-services/events/regional-events/

29/07/2025

Our next online peer support meeting is scheduled for Thursday 7th August 7-9pm. Please come and join our volunteer Charmaine for 2 hours of informal chat and meet others in similar circumstances.

If you are in any doubt about signing up here are a few recent comments from meeting attendees:

‘It was so wonderful to connect with others who understand’

‘This was my first meeting. I found Charmaine very helpful, sympathetic, and knowledgeable. It was good to know there is a support network’

‘It was very uplifting to be able to connect with others going through similar challenges. Gill was very welcoming and accommodating, she opened conversations and made everyone feel comfortable sharing their stories. Really well done’

Don't forget to book your place!
https://www.amend.org.uk/patients/support/events/regional-events/

It's good to talk!

26/06/2025

2 weeks today until our next online peer support meeting!

Please join our volunteer, Sophie on 10th July 7-9pm and meet others with MEN and PPGL syndromes. The meeting will be held on Zoom.

Don't forget to book your place using the link in our bio.

https://www.amend.org.uk/patients/support/events/regional-events/

It's good to talk!

04/06/2025

Our next online peer support meeting is being held on Tuesday 17th June 7 – 9pm

Please join our volunteer, Gill and meet others with MEN and PPGL syndromes. The meeting will be held on Zoom.

Don't forget to book your place.

https://www.amend.org.uk/patients/support/events/regional-events/

It's good to talk!

04/06/2025

This Page will be deleted in the next few months. Information relevant to PPSUK / PPGLs will now be fed through the AMEND page which can be found and followed at https://www.facebook.com/AssociationforMENdisorders

29/05/2025

Today is . Although our communities do not have Addison's Disease, many will be left with adrenal insufficiency after surgery for the tumours and cancers in MEN, PPGL or ACC. We highly recommend following ADSHG to learn all about learning to live well with adrenal insufficiency.

24/05/2025

Last chance to book!
https://www.amend.org.uk/patients/support/events/national-events/2025-annual-patient-information-day/

‼ Today, Saturday 24th May, is the last day for booking your place at our 2025 Annual Patient Information Day next weekend on Saturday 31st May. You have until 10pm tonight to book your FREE place. Hope you can make it!

📲 https://www.amend.org.uk/patients/support/events/national-events/2025-annual-patient-information-day/

07/05/2025

The Great North Run – the world’s biggest half marathon, take your place among 60,000 incredible runners on this unforgettable 13.1-mile journey from Newcastle upon Tyne to the stunning South Shields coastline on Saturday 7 September 2025.

We still have 5 spaces left in this event. In the last few years, we have filled all the places in the Great North Run pretty much immediately and have had to turn down potential runners. This year we have yet to sign up any runners!

We have an option to sell our 5 places to another charity if we no longer want them but wanted to give anyone a last chance to take part and raise funds for AMEND.

If anyone is interested in running, please can you let Helen know by the 31st May. helen@amend.org.uk Thank you!
🏃‍♀️🎽🏃‍♂️

28/04/2025

This Thursday we have our next online peer support meeting.

Please join our volunteer, Charmaine on 1st May 7-9pm and meet others with MEN and PPGL syndromes. The meeting will be held on Zoom.

Don't forget to book your place.

https://www.amend.org.uk/patients/support/events/regional-events/

It's good to talk!

14/04/2025

‼⏰ PPSUK SOCIAL MEDIA WILL BE MOVING BY 1 JUNE ⏰‼

PPSUK is a group under the AMEND banner. On advice of our publicity and marketing volunteers, we will be migrating this account over to AMEND by 1 June 2025, after which this account will be deleted. This migration and consolidation will help to avoid confusion of the relation between PPSUK and AMEND, and will help AMEND and its patient communities to amplify their voices further.

FACEBOOK: Please make sure that you are following AMEND's page as soon as possible at https://www.facebook.com/AssociationforMENdisorders

INSTAGRAM: Please make sure that you are following AMEND's Instagram Account as soon as possible at:

07/04/2025

Birmingham runners – WE NEED YOU!

We still have 5 spaces in the AJ Bell Great Birmingham 10k on Sunday 4th May.

Run through the heart of Birmingham! 🏃‍♂️ Starting in Centenary Square, passing iconic landmarks, and finishing with a grandstand moment in Smithfield.

From start-line excitement to cheering crowds and rocking music zones, the AJ Bell Great Birmingham Run on 4 May 2025 is the ultimate running experience. 🥳

Please feel free to share this with friends and family as we would love to fill the spaces and hopefully raise some much-needed funds for AMEND!

Contact Helen in the office if you or anyone else are interested in taking part.
helen@amend.org.uk
🏃‍♂️👟🎽🏃‍♀️