Alport UK
@alportuk.bsky.social
Alport UK is a patient-led organisation dedicated to empowering people living with Alport Syndrome to enjoy the best possible quality of life.
Do we have your email?
Want to know about upcoming events?
Drop us your email to be added to Mailchimp and never miss out again!
Info@alportuk.org or DM now!
Want to know about upcoming events?
Drop us your email to be added to Mailchimp and never miss out again!
Info@alportuk.org or DM now!
August 20, 2025 at 8:00 AM
Do we have your email?
Want to know about upcoming events?
Drop us your email to be added to Mailchimp and never miss out again!
Info@alportuk.org or DM now!
Want to know about upcoming events?
Drop us your email to be added to Mailchimp and never miss out again!
Info@alportuk.org or DM now!
Goodluck Sam, Adam and all taking part in the World Transplant Games!
#transplantgames #alportuk #germany #worldtransplantgames
#transplantgames #alportuk #germany #worldtransplantgames
August 18, 2025 at 3:00 PM
Goodluck Sam, Adam and all taking part in the World Transplant Games!
#transplantgames #alportuk #germany #worldtransplantgames
#transplantgames #alportuk #germany #worldtransplantgames
Alport Warriors, Save the date!
Alport Winter Wonderland Day,
6 December 2025
London
More information and registration coming soon.
Can you hear Santa’s sleigh bells?
#familyday #alportwarriors #familyandfriends #winterwonderland
Alport Winter Wonderland Day,
6 December 2025
London
More information and registration coming soon.
Can you hear Santa’s sleigh bells?
#familyday #alportwarriors #familyandfriends #winterwonderland
August 7, 2025 at 11:00 AM
Alport Warriors, Save the date!
Alport Winter Wonderland Day,
6 December 2025
London
More information and registration coming soon.
Can you hear Santa’s sleigh bells?
#familyday #alportwarriors #familyandfriends #winterwonderland
Alport Winter Wonderland Day,
6 December 2025
London
More information and registration coming soon.
Can you hear Santa’s sleigh bells?
#familyday #alportwarriors #familyandfriends #winterwonderland
Join Alport Warriors!
A supportive FB group for those living with Alport Syndrome.
www.facebook.com/groups/17746...
Because no one should face this alone.
#AlportWarriors #AlportSyndrome #RareDiseaseCommunity #SupportNetwork #AlportUK
A supportive FB group for those living with Alport Syndrome.
www.facebook.com/groups/17746...
Because no one should face this alone.
#AlportWarriors #AlportSyndrome #RareDiseaseCommunity #SupportNetwork #AlportUK
July 28, 2025 at 9:08 AM
Join Alport Warriors!
A supportive FB group for those living with Alport Syndrome.
www.facebook.com/groups/17746...
Because no one should face this alone.
#AlportWarriors #AlportSyndrome #RareDiseaseCommunity #SupportNetwork #AlportUK
A supportive FB group for those living with Alport Syndrome.
www.facebook.com/groups/17746...
Because no one should face this alone.
#AlportWarriors #AlportSyndrome #RareDiseaseCommunity #SupportNetwork #AlportUK
We're still smiling!
2025 Nottingham info day was a hit!
The Alport UK team is already planning the next one.
Comment “Christmas” for details on our Dec 6 winter wonderland meetup! 🎄
#Christmas #NottinghamInformationDay #PeopleLivingWithAlportSyndrome #Community #Collaboration
2025 Nottingham info day was a hit!
The Alport UK team is already planning the next one.
Comment “Christmas” for details on our Dec 6 winter wonderland meetup! 🎄
#Christmas #NottinghamInformationDay #PeopleLivingWithAlportSyndrome #Community #Collaboration
July 23, 2025 at 8:45 AM
We're still smiling!
2025 Nottingham info day was a hit!
The Alport UK team is already planning the next one.
Comment “Christmas” for details on our Dec 6 winter wonderland meetup! 🎄
#Christmas #NottinghamInformationDay #PeopleLivingWithAlportSyndrome #Community #Collaboration
2025 Nottingham info day was a hit!
The Alport UK team is already planning the next one.
Comment “Christmas” for details on our Dec 6 winter wonderland meetup! 🎄
#Christmas #NottinghamInformationDay #PeopleLivingWithAlportSyndrome #Community #Collaboration
Taking part in the British Transplant Games? 🏅
We want to share your inspiring journey! Comment if you’re competing, and we’ll connect.
#TransplantGames #AlportUK #TransplantWarrior #BritishTransplantGames #ShareYourStory #OrganDonationMatters
We want to share your inspiring journey! Comment if you’re competing, and we’ll connect.
#TransplantGames #AlportUK #TransplantWarrior #BritishTransplantGames #ShareYourStory #OrganDonationMatters
July 21, 2025 at 5:55 PM
Taking part in the British Transplant Games? 🏅
We want to share your inspiring journey! Comment if you’re competing, and we’ll connect.
#TransplantGames #AlportUK #TransplantWarrior #BritishTransplantGames #ShareYourStory #OrganDonationMatters
We want to share your inspiring journey! Comment if you’re competing, and we’ll connect.
#TransplantGames #AlportUK #TransplantWarrior #BritishTransplantGames #ShareYourStory #OrganDonationMatters
Engagement Managers wanted!
Do you enjoy supporting others?
Apply now info@alportuk.org
#alpotuk #volunteer #engagement
Do you enjoy supporting others?
Apply now info@alportuk.org
#alpotuk #volunteer #engagement
July 15, 2025 at 9:10 AM
Engagement Managers wanted!
Do you enjoy supporting others?
Apply now info@alportuk.org
#alpotuk #volunteer #engagement
Do you enjoy supporting others?
Apply now info@alportuk.org
#alpotuk #volunteer #engagement
Another fantastic day!
- Great Q&A with Alport syndrome experts
- Kids & teens loved the high-energy workshop!
- Alport Avengers enjoyed dinner & disco bowling!
- Media team captured it all!
Want to connect? Email info@alportuk.org
- Great Q&A with Alport syndrome experts
- Kids & teens loved the high-energy workshop!
- Alport Avengers enjoyed dinner & disco bowling!
- Media team captured it all!
Want to connect? Email info@alportuk.org
July 11, 2025 at 2:08 PM
Another fantastic day!
- Great Q&A with Alport syndrome experts
- Kids & teens loved the high-energy workshop!
- Alport Avengers enjoyed dinner & disco bowling!
- Media team captured it all!
Want to connect? Email info@alportuk.org
- Great Q&A with Alport syndrome experts
- Kids & teens loved the high-energy workshop!
- Alport Avengers enjoyed dinner & disco bowling!
- Media team captured it all!
Want to connect? Email info@alportuk.org
Exercise tips
At our recent Alport information day in Nottingham
Emma Watson and Rosey Billaney from @leicesteruniversity shared the importance of exercise for people living with Alport Syndrome.
Check out @kidneybeam for more tips and tricks to stay healthy!
At our recent Alport information day in Nottingham
Emma Watson and Rosey Billaney from @leicesteruniversity shared the importance of exercise for people living with Alport Syndrome.
Check out @kidneybeam for more tips and tricks to stay healthy!
July 10, 2025 at 2:08 PM
Exercise tips
At our recent Alport information day in Nottingham
Emma Watson and Rosey Billaney from @leicesteruniversity shared the importance of exercise for people living with Alport Syndrome.
Check out @kidneybeam for more tips and tricks to stay healthy!
At our recent Alport information day in Nottingham
Emma Watson and Rosey Billaney from @leicesteruniversity shared the importance of exercise for people living with Alport Syndrome.
Check out @kidneybeam for more tips and tricks to stay healthy!
A huge thank you to those of you who came to Nottingham!
Families, friends, clinicians, researchers, volunteers
and all involved behind the scenes thank you!
Keep your eyes peeled for official photographs
and updates on the next information day and socials.
See you there!
Families, friends, clinicians, researchers, volunteers
and all involved behind the scenes thank you!
Keep your eyes peeled for official photographs
and updates on the next information day and socials.
See you there!
July 8, 2025 at 7:25 AM
A huge thank you to those of you who came to Nottingham!
Families, friends, clinicians, researchers, volunteers
and all involved behind the scenes thank you!
Keep your eyes peeled for official photographs
and updates on the next information day and socials.
See you there!
Families, friends, clinicians, researchers, volunteers
and all involved behind the scenes thank you!
Keep your eyes peeled for official photographs
and updates on the next information day and socials.
See you there!
What is RaDaR?
Are you registered?
RaDaR tracks data on 1200+ Alport patients in the UK to boost kidney research.
Join to improve Alport diagnosis & treatments!
Register via your consultant!
More info: www.ukkidney.org/rare-renal/a...
#AlportSyndrome #RaDaR
Are you registered?
RaDaR tracks data on 1200+ Alport patients in the UK to boost kidney research.
Join to improve Alport diagnosis & treatments!
Register via your consultant!
More info: www.ukkidney.org/rare-renal/a...
#AlportSyndrome #RaDaR
July 7, 2025 at 1:01 PM
What is RaDaR?
Are you registered?
RaDaR tracks data on 1200+ Alport patients in the UK to boost kidney research.
Join to improve Alport diagnosis & treatments!
Register via your consultant!
More info: www.ukkidney.org/rare-renal/a...
#AlportSyndrome #RaDaR
Are you registered?
RaDaR tracks data on 1200+ Alport patients in the UK to boost kidney research.
Join to improve Alport diagnosis & treatments!
Register via your consultant!
More info: www.ukkidney.org/rare-renal/a...
#AlportSyndrome #RaDaR
This afternoon @lornamilne.bsky.social shared research on pregnancy in Alport Syndrome at Alport UK Nottingham Information Day
July 5, 2025 at 2:25 PM
This afternoon @lornamilne.bsky.social shared research on pregnancy in Alport Syndrome at Alport UK Nottingham Information Day
Nottingham Alport Information day is underway, with our teens talking to Dan Jagger and Martin Christian about hearing and how to manage Alport Syndrome
July 5, 2025 at 11:32 AM
Nottingham Alport Information day is underway, with our teens talking to Dan Jagger and Martin Christian about hearing and how to manage Alport Syndrome
Last day today!
Submit an abstract for The 2025 International workshop on Alport Syndrome,
Beijing, China,
5-7 September 2025
Deadline 4 July
Submit here: shorturl.at/RfhMV
If you haven’t yet registered for the workshop,
shorturl.at/v8VbB
Submit an abstract for The 2025 International workshop on Alport Syndrome,
Beijing, China,
5-7 September 2025
Deadline 4 July
Submit here: shorturl.at/RfhMV
If you haven’t yet registered for the workshop,
shorturl.at/v8VbB
July 4, 2025 at 8:00 AM
Last day today!
Submit an abstract for The 2025 International workshop on Alport Syndrome,
Beijing, China,
5-7 September 2025
Deadline 4 July
Submit here: shorturl.at/RfhMV
If you haven’t yet registered for the workshop,
shorturl.at/v8VbB
Submit an abstract for The 2025 International workshop on Alport Syndrome,
Beijing, China,
5-7 September 2025
Deadline 4 July
Submit here: shorturl.at/RfhMV
If you haven’t yet registered for the workshop,
shorturl.at/v8VbB
Are you running the #GreatNorthRun for Alport UK?
Today is the start of the
#GreatDonationDrive
Share your fundraising page far and wide.
You’re doing something amazing, let’s shout about it!
#alportuk #GreatNorthRun #fundraising #running
Today is the start of the
#GreatDonationDrive
Share your fundraising page far and wide.
You’re doing something amazing, let’s shout about it!
#alportuk #GreatNorthRun #fundraising #running
July 1, 2025 at 6:50 PM
Are you running the #GreatNorthRun for Alport UK?
Today is the start of the
#GreatDonationDrive
Share your fundraising page far and wide.
You’re doing something amazing, let’s shout about it!
#alportuk #GreatNorthRun #fundraising #running
Today is the start of the
#GreatDonationDrive
Share your fundraising page far and wide.
You’re doing something amazing, let’s shout about it!
#alportuk #GreatNorthRun #fundraising #running
Researching Alport Syndrome?
Submit an abstract for The 2025 International workshop on Alport Syndrome,
Beijing, China,
5-7 September 2025
Deadline 4 July
Submit here: shorturl.at/RfhMV
If you haven’t yet registered for the workshop,
shorturl.at/v8VbB
Submit an abstract for The 2025 International workshop on Alport Syndrome,
Beijing, China,
5-7 September 2025
Deadline 4 July
Submit here: shorturl.at/RfhMV
If you haven’t yet registered for the workshop,
shorturl.at/v8VbB
June 26, 2025 at 11:50 AM
Researching Alport Syndrome?
Submit an abstract for The 2025 International workshop on Alport Syndrome,
Beijing, China,
5-7 September 2025
Deadline 4 July
Submit here: shorturl.at/RfhMV
If you haven’t yet registered for the workshop,
shorturl.at/v8VbB
Submit an abstract for The 2025 International workshop on Alport Syndrome,
Beijing, China,
5-7 September 2025
Deadline 4 July
Submit here: shorturl.at/RfhMV
If you haven’t yet registered for the workshop,
shorturl.at/v8VbB
Are you researching Alport Syndrome?
Submit an abstract by 4 July to present your research at The 2025 International Workshop on Alport Syndrome, 5-7 September 2025, Beijing, China.
Submit an extract here: shorturl.at/QjZ5v
Deadline: 4 July
Submit an abstract by 4 July to present your research at The 2025 International Workshop on Alport Syndrome, 5-7 September 2025, Beijing, China.
Submit an extract here: shorturl.at/QjZ5v
Deadline: 4 July
June 23, 2025 at 2:45 PM
Are you researching Alport Syndrome?
Submit an abstract by 4 July to present your research at The 2025 International Workshop on Alport Syndrome, 5-7 September 2025, Beijing, China.
Submit an extract here: shorturl.at/QjZ5v
Deadline: 4 July
Submit an abstract by 4 July to present your research at The 2025 International Workshop on Alport Syndrome, 5-7 September 2025, Beijing, China.
Submit an extract here: shorturl.at/QjZ5v
Deadline: 4 July
Huge thanks to all our amazing volunteers at Alport UK!
Your support makes a difference in the lives of those with Alport syndrome.
Want to join us?
Email info@alportuk.org 💙
#VolunteerWeek #AlportUK #ThankYou #ManyHands #TogetherWeCan
Your support makes a difference in the lives of those with Alport syndrome.
Want to join us?
Email info@alportuk.org 💙
#VolunteerWeek #AlportUK #ThankYou #ManyHands #TogetherWeCan
June 6, 2025 at 9:10 AM
Huge thanks to all our amazing volunteers at Alport UK!
Your support makes a difference in the lives of those with Alport syndrome.
Want to join us?
Email info@alportuk.org 💙
#VolunteerWeek #AlportUK #ThankYou #ManyHands #TogetherWeCan
Your support makes a difference in the lives of those with Alport syndrome.
Want to join us?
Email info@alportuk.org 💙
#VolunteerWeek #AlportUK #ThankYou #ManyHands #TogetherWeCan
🌈 Alport UK celebrates #PrideMonth! 🌈
Everyone with Alport Syndrome deserves to be recognized for who they are, whether LGBTQIA+ or an ally.
Let's build a world where everyone feels seen & supported! 💖
#InclusiveCommunity #KidneyPride #RareAndProud #AlportSyndrome
Everyone with Alport Syndrome deserves to be recognized for who they are, whether LGBTQIA+ or an ally.
Let's build a world where everyone feels seen & supported! 💖
#InclusiveCommunity #KidneyPride #RareAndProud #AlportSyndrome
June 4, 2025 at 8:10 AM
🌈 Alport UK celebrates #PrideMonth! 🌈
Everyone with Alport Syndrome deserves to be recognized for who they are, whether LGBTQIA+ or an ally.
Let's build a world where everyone feels seen & supported! 💖
#InclusiveCommunity #KidneyPride #RareAndProud #AlportSyndrome
Everyone with Alport Syndrome deserves to be recognized for who they are, whether LGBTQIA+ or an ally.
Let's build a world where everyone feels seen & supported! 💖
#InclusiveCommunity #KidneyPride #RareAndProud #AlportSyndrome
You are not alone, at Alport UK we endeavour to offer support, comfort and care throughout your journey and believe that everyone living with Alport Syndrome should feel safe, included and part of a community.
Please email info@alportuk.org if you wish to speak to one of us.
Please email info@alportuk.org if you wish to speak to one of us.
May 14, 2025 at 7:50 AM
You are not alone, at Alport UK we endeavour to offer support, comfort and care throughout your journey and believe that everyone living with Alport Syndrome should feel safe, included and part of a community.
Please email info@alportuk.org if you wish to speak to one of us.
Please email info@alportuk.org if you wish to speak to one of us.
Thank you to Florence Nightingale for changing the path for a brighter future for nursing and to all our nurses who help create a brighter future for people living with Alport Syndrome.
#florencenightingale #renalnurses #dialysisnurses #transplantnurses #changes #alportsyndrome
#florencenightingale #renalnurses #dialysisnurses #transplantnurses #changes #alportsyndrome
May 13, 2025 at 12:35 PM
Thank you to Florence Nightingale for changing the path for a brighter future for nursing and to all our nurses who help create a brighter future for people living with Alport Syndrome.
#florencenightingale #renalnurses #dialysisnurses #transplantnurses #changes #alportsyndrome
#florencenightingale #renalnurses #dialysisnurses #transplantnurses #changes #alportsyndrome
Registration is open now!
Join us for, The 2025 International workshop on Alport Syndrome, in Beijing, China.
4-7 September
(4 September patient day)
Secure your spot now and be part of making a brighter future for people living with Alport Syndrome.
tinyurl.com/5674vckz
Join us for, The 2025 International workshop on Alport Syndrome, in Beijing, China.
4-7 September
(4 September patient day)
Secure your spot now and be part of making a brighter future for people living with Alport Syndrome.
tinyurl.com/5674vckz
May 7, 2025 at 9:04 AM
Registration is open now!
Join us for, The 2025 International workshop on Alport Syndrome, in Beijing, China.
4-7 September
(4 September patient day)
Secure your spot now and be part of making a brighter future for people living with Alport Syndrome.
tinyurl.com/5674vckz
Join us for, The 2025 International workshop on Alport Syndrome, in Beijing, China.
4-7 September
(4 September patient day)
Secure your spot now and be part of making a brighter future for people living with Alport Syndrome.
tinyurl.com/5674vckz
Nomination are now open!
Follow the link below and nominate Alport UK to receive £5000 -
It only take a minute and can make a huge difference!
bit.ly/42Rm4Cl
Follow the link below and nominate Alport UK to receive £5000 -
It only take a minute and can make a huge difference!
bit.ly/42Rm4Cl
May 2, 2025 at 9:51 AM
Nomination are now open!
Follow the link below and nominate Alport UK to receive £5000 -
It only take a minute and can make a huge difference!
bit.ly/42Rm4Cl
Follow the link below and nominate Alport UK to receive £5000 -
It only take a minute and can make a huge difference!
bit.ly/42Rm4Cl
💡 Want to fundraise for Alport UK? Check out these fun ideas! 🎉
- Bake sale 🍰
- Sponsored walk 👟
- Craft & create 🎨
- Quiz night 🎤
- Coffee morning ☕️
Every penny helps families with Alport syndrome! 💙 Message us!
#FundraiseForAlport #MakeNoiseForAlport #AlportUK #FundraisingIdeas
- Bake sale 🍰
- Sponsored walk 👟
- Craft & create 🎨
- Quiz night 🎤
- Coffee morning ☕️
Every penny helps families with Alport syndrome! 💙 Message us!
#FundraiseForAlport #MakeNoiseForAlport #AlportUK #FundraisingIdeas
April 28, 2025 at 10:45 AM
💡 Want to fundraise for Alport UK? Check out these fun ideas! 🎉
- Bake sale 🍰
- Sponsored walk 👟
- Craft & create 🎨
- Quiz night 🎤
- Coffee morning ☕️
Every penny helps families with Alport syndrome! 💙 Message us!
#FundraiseForAlport #MakeNoiseForAlport #AlportUK #FundraisingIdeas
- Bake sale 🍰
- Sponsored walk 👟
- Craft & create 🎨
- Quiz night 🎤
- Coffee morning ☕️
Every penny helps families with Alport syndrome! 💙 Message us!
#FundraiseForAlport #MakeNoiseForAlport #AlportUK #FundraisingIdeas