Alex TLC
Alex, The Leukodystrophy Charity, or Alex TLC, provides invaluable support and information to people affected by leukodystrophies and their families.
Linktree: https://linktr.ee/Alextlccharity
@ukglia.bsky.social
The UK Glia Network brings together researchers from or working in the UK who are passionate about glia.
@tog4shortlives.bsky.social
We are the UK charity for children and young people who are expected to have short lives.
@camrare.bsky.social
Making rare disease an everyday conversation. CamRARE is a charity empowering rare disease communities & fostering cross-sector collaboration to improve outcomes for those affected. #RareDisease Local | National | Global www.camraredisease.org
@mitocamb.bsky.social
MitoCAMB brings together a team of clinical researchers focused on mitochondrial and neurodegenerative disease translational research. mitocamb.medschl.cam.ac.uk (Photo: Florian Klimm)
@ernmetabern.bsky.social
The European Reference Network for Rare Hereditary Metabolic Disorders (MetabERN). A better future for Rare Inherited Metabolic Disease patients. Visit us 🔗 https://metab.ern-net.eu/
@erdera.bsky.social
Advancing prevention, diagnosis and treatment research for the 30 million people living with a rare disease in Europe. 🔗 erdera.org Co-funded by European Union's #HorizonEU Research & Innovation programme. Views expressed are of authors only.
@socendocrinology.bsky.social
The UK home of endocrinology. We bring together the global endocrine community to share ideas and advance our discipline. www.endocrinology.org
@carers-uk.bsky.social
Carers UK is the leading national charity for unpaid carers. We support, advocate for, champion and connect carers across the UK, so that no one has to care alone.
@nhs.uk
@mdukcharity.bsky.social
We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
@medicsforrare.bsky.social
Our vision is a world in which there is equitable healthcare for everyone
@rare-revolution.bsky.social
RARE Revolution is a FREE, quarterly digital magazine for the Rare disease community and those wishing to learn more and be inspired by their stories. It seeks to give RARE patients and the charities that represent them a voice to be heard on their terms,
@addisonsdisease.bsky.social
The UK charity for all affected by Addison’s disease & adrenal insufficiency. 🗓 29 May: #AddisonsDiseaseDay 🎉#TeamAddisons 📲Learn more: #AddisonsQA
@alderhey.nhs.uk
Creating a healthier future for children & young people everywhere. Posting 9am-5pm weekdays (excluding bank holidays) 😀 #AlderHeyFamily
@makesomenoise.com
Official charity of Heart, Capital, Capital XTRA, Classic FM, Smooth, LBC, Radio X and Gold 🩵 We fund and support life changing projects across the UK. https://shor.by/globalsmakesomenoise
@justgiving.bsky.social
The world’s leading platform for charity giving. We help *amazing* people like you raise more money for the causes you care about.
@rarevolution.bsky.social
Account for the BLACKSWAN Foundation and RE(ACT) Community #RAREvolution, stand up for research on #rarediseases blackswanfoundation.ch http://www.react-congress.org 🦓
@lilyfoundation.bsky.social
Fighting mito, finding hope Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure. https://www.thelilyfoundation.org.uk/ #mitochondrialdisease
@dcpcampaign.bsky.social
The DCP is a coalition of organisations campaigning to improve support for disabled children, young people & families. https://disabledchildrenspartnership.org.uk/
@genomicsengland.bsky.social
We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
@neuroalscotland.bsky.social
The Neurological Alliance of Scotland is an umbrella body of organisations that represent people with a neurological condition and those who support them. We work to improve the care and support that people receive.
@amsterdamleuko.bsky.social
In the Amsterdam Leukodystrophy Center (ALC), clinicians and laboratory scientists work together to develop treatments for heritable white matter diseases | part of the Emma Children’s Hospital (Amsterdam UMC)
@bsky.app
official Bluesky account (check username👆) Bugs, feature requests, feedback: support@bsky.app