HHT Scotland
Vision:
Build support, awareness, and community for everyone affected by HHT in Scotland.
Mission:
We want to foster a supportive, inclusive community where those affected by HHT can connect, share and lead. This includes shaping roles within the group, exploring peer support networks, lobbying and influencing future clinical pathway development, always ensuring that people with lived experience are driving the direction.
Priority
Establish a trusted source of information and support
We want to foster a supportive, inclusive community where all of us affected by HHT* can connect, share and lead. We will always ensure that people with lived experience are driving our direction. We will build on our strengths through training and mentoring. We will develop peer support networks and seek to influence future service developments.
*Highlighting that there are 3 distinct strains of HHT, (Endoglin/ACVRL 1/SMAD4) with very different symptoms and outcomes, and increasing awareness and understanding.