GlobalSkin 2025 Conference: Day 1

Today Trina attended Day 1 of the GlobalSkin conference in Prague

Here is her report:

Day 1:

• A very early start.

• 53 countries represented

• 163 Organisations represented for RareDerm Diseases.

• Explore the mental health unmet needs of RareSkin conditions

• Rare conditions have a serious effect on social and family life. This triggers isolation and feelings of neglect not just for the patient but also for other members of the extended family.

  It is vital that there is psychological support at diagnosis for every rare disease patient.

• Results on Survey issued to RareDerm Diseases a few months ago

1. Only 15% of Patient Organisations felt their members were very satisfied with current treatments, down from 31% in 2021

2. Co morbidities increase the burden

Sharing material PEM Friends has created with other Patient Organisations         

Trina also met up with these two people. All 3 organisations represent AIBD at the GlobalSkin RareDerm Day!

Marc Yale - Ippf

Trina Harris - PEM Friends

Noel Mudibo - Pemphigus Africa Trust

#Healourskin

Another meeting for Trina was Mandy Aldwin from the UK

Ichthyosis Support Group

Mandy and Trina

Afternoon session:

Discussed: With ongoing treatment needs, how might we amplify the patient voice to influence research and Industry?

This was the 3rd session where we discussed each point in small groups and it will inform the call to action report which will be produced by GlobalSkin and shared soon.

We would like to thank Trina for attending this conference and representing PEM Friends

Watch this space for a report on day 2!

#GSChampion2025 #GlobalSkin #Dermatology #PatientAdvocacy #Conference