Scottish Huntington's Association
@ScottishHD
Followers
2K
Following
999
Media
2K
Statuses
12K
The only charity in the country exclusively dedicated to providing expert and personalised support for those impacted by Huntington’s disease.
Scotland
Joined August 2010
The boilerplate response from @GCHSCP that follows doesn't mention that it failed to consult with service users, the service provider or @NHSGGC #HuntingtonsDisease Clinical Leads prior to recommending scrapping the service. Result: our service was misunderstood & misrepresented.
"Our support is proactive, community based, designed to prevent crisis situations" @ScottishHD is fighting back after Glasgow City Council announced they'd be ending the charity's contract for specialist support in December.
1
10
9
The boilerplate response from @GCHSCP that follows doesn't mention that it failed to consult with service users, the service provider or @NHSGGC #HuntingtonsDisease Clinical Leads prior to recommending scrapping the service. Result: our service was misunderstood & misrepresented.
"Our support is proactive, community based, designed to prevent crisis situations" @ScottishHD is fighting back after Glasgow City Council announced they'd be ending the charity's contract for specialist support in December.
1
10
9
@ScottishHD @GCHSCP @NHSGGC I hope there is still room for manoeuvre here, particularly in the context of all four UK Governments’ commitments on the UK Rare Disease Framework which it was confirmed today was extended for a further year.
0
1
1
Scrapping a service without speaking to the people who rely on it or those who run it is unacceptable. This misrepresentation needs addressed👇
The boilerplate response from @GCHSCP that follows doesn't mention that it failed to consult with service users, the service provider or @NHSGGC #HuntingtonsDisease Clinical Leads prior to recommending scrapping the service. Result: our service was misunderstood & misrepresented.
0
1
1
Nor does the boilerplate response mention that exactly half of the IJB members voted to stop this cut but it is still going ahead despite there being no 'casting vote'.
The boilerplate response from @GCHSCP that follows doesn't mention that it failed to consult with service users, the service provider or @NHSGGC #HuntingtonsDisease Clinical Leads prior to recommending scrapping the service. Result: our service was misunderstood & misrepresented.
0
1
3
Our Impact And Engagement Fund has re-opened applications until 31 January 2026. Learn more 👉 https://t.co/jqmuEaCrKY Apply here 👉 https://t.co/uvp5isezog
0
2
2
We are hugely grateful to @ferrerforgood for supporting our 2025 Family Gathering. Over 170 members of the Huntington’s community joined us in Glasgow along with health and social care practitioners and researchers for a wonderful day of connection, learning and friendship.
0
0
2
We are hugely grateful to @WaveLifeSci for supporting our 2025 Family Gathering. Over 170 members of the Huntington’s disease community joined us in Glasgow along with health and social care practitioners and researchers for a wonderful day of connection, learning and friendship.
0
0
3
We are hugely grateful to @uniQure_NV for supporting our 2025 Family Gathering. Over 170 members of the Huntington’s disease community joined us in Glasgow along with health and social care practitioners and researchers for a wonderful day of connection, learning and friendship.
0
0
3
We are hugely grateful to @Skyhawk_Tx for supporting our 2025 Family Gathering. Over 170 members of the Huntington’s disease community joined us in Glasgow along with health and social care practitioners and researchers for a wonderful day of connection, learning and friendship.
0
0
1
We are hugely grateful to @EHDN_News for supporting our 2025 Family Gathering. Over 170 members of the Huntington’s disease community joined us in Glasgow along with health and social care practitioners and researchers for a wonderful day of connection, learning and friendship.
0
0
2
We are hugely grateful to @Roche for supporting our 2025 Family Gathering. Over 170 members of the Huntington’s disease community joined us in Glasgow along with health and social care practitioners and researchers for a wonderful day of connection, learning and friendship.
0
0
1
🗣️We want to hear from you! 🗣️ 💬 Please take a moment to share your thoughts in our short 5-minute survey: 🔗👉🏼 https://t.co/l32NSBw9Eb
#TeamSHA #HDawareness #Huntingtonsdisease #Fundraise #MakeADifference
0
0
1
The Lanarkshire Support Group meets tonight, Wednesday 12 November, from 6.30pm to 9.30pm at St Augustine’s Chapel Hall, 12 Dundyvan Rd, Coatbridge, ML5 1DQ. To find out more, please email lanarkshire@hdscotland.org
0
2
1
We are thrilled to share that Scottish Huntington’s Association has been selected as the chosen charity for the Band of HM Royal Marines Scotland concert at Carnegie Hall, Dunfermline, on Sunday 23 November 2025!
0
1
2
We’re looking forward to seeing you all tomorrow at this year’s Family Gathering at voco Grand Central, Glasgow. We can’t wait to share the day with you.
0
0
1
We’d like to remind you of tomorrow's online Greater Glasgow and Clyde support group. Support Group for all | Thursday 6 November | 7 – 8.30pm 🔗 https://t.co/k3yqRMgMsm We look forward to welcoming you.
0
0
0
In a brief press release from uniQure issued yesterday we learned that the company is no longer aligned with the USA treatment licensing authority on the most appropriate way of moving their drug AMT-130 forward in that country. Read the full article here:
0
0
0
Lancaster University is conducting a study to better understand the experiences of non-affected parents who are raising children while caring for a partner with Huntington’s disease. 👉 To find out more or register interest, email: l.furr@lancaster.ac.uk
0
1
2