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!
20.08.2025 08:00 — 👍 0 🔁 0 💬 0 📌 0
Goodluck Sam, Adam and all taking part in the World Transplant Games!
#transplantgames #alportuk #germany #worldtransplantgames
18.08.2025 15:00 — 👍 0 🔁 0 💬 0 📌 0
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
07.08.2025 11:00 — 👍 0 🔁 0 💬 0 📌 0
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
28.07.2025 09:08 — 👍 0 🔁 0 💬 0 📌 0
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
23.07.2025 08:45 — 👍 0 🔁 0 💬 0 📌 0
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
21.07.2025 17:55 — 👍 0 🔁 0 💬 0 📌 0
Engagement Managers wanted!
Do you enjoy supporting others?
Apply now info@alportuk.org
#alpotuk #volunteer #engagement
15.07.2025 09:10 — 👍 0 🔁 0 💬 0 📌 0
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
11.07.2025 14:08 — 👍 0 🔁 0 💬 0 📌 0
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!
10.07.2025 14:08 — 👍 0 🔁 0 💬 0 📌 0
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!
08.07.2025 07:25 — 👍 0 🔁 0 💬 0 📌 0
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
07.07.2025 13:01 — 👍 0 🔁 0 💬 0 📌 0
Around 100 people seated in a circle, 3 rows deep, introducing themselves & outlining what they're hoping to learn today.
An exciting day ahead at the @alportuk.bsky.social Alport Syndrome patient day in Nottingham.
Here to learn from people how this kidney/ear/eye syndrome affects them & their families.
🧪🫘👂🏼👁️🧬
05.07.2025 09:43 — 👍 6 🔁 3 💬 1 📌 0
This afternoon @lornamilne.bsky.social shared research on pregnancy in Alport Syndrome at Alport UK Nottingham Information Day
05.07.2025 14:25 — 👍 1 🔁 0 💬 0 📌 1
Nottingham Alport Information day is underway, with our teens talking to Dan Jagger and Martin Christian about hearing and how to manage Alport Syndrome
05.07.2025 11:32 — 👍 0 🔁 0 💬 0 📌 0
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
04.07.2025 08:00 — 👍 0 🔁 0 💬 0 📌 0
3 days left to register!
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
02.07.2025 08:05 — 👍 0 🔁 0 💬 0 📌 0
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
01.07.2025 18:50 — 👍 1 🔁 0 💬 0 📌 0
Registration — The 2025 International Workshop on Alport Syndrome - Beijing
Register here for The 2021 online International workshop on Alport Syndrome
Closing date this Friday!
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
30.06.2025 10:06 — 👍 0 🔁 0 💬 0 📌 0
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
26.06.2025 11:50 — 👍 0 🔁 0 💬 0 📌 0
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
23.06.2025 14:45 — 👍 0 🔁 0 💬 0 📌 0
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
06.06.2025 09:10 — 👍 0 🔁 0 💬 0 📌 0
🌈 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
04.06.2025 08:10 — 👍 0 🔁 0 💬 0 📌 0
Congratulations to all, a phenomenal achievement for the kidney community and all those living with kidney disease. The future is already looking brighter.
26.05.2025 13:08 — 👍 2 🔁 1 💬 0 📌 0
shorturl.at/bJHRU
21.05.2025 09:18 — 👍 0 🔁 1 💬 0 📌 0
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.
14.05.2025 07:49 — 👍 1 🔁 0 💬 0 📌 0
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
13.05.2025 12:35 — 👍 1 🔁 0 💬 0 📌 0
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
07.05.2025 09:04 — 👍 1 🔁 0 💬 0 📌 0
I RAN A MARATHON 🥹 (faster than I passed my viva 🌚) would love to make it to £1000 for @alportuk.bsky.social ➡️ www.justgiving.com/page/lorna-m... thank you to everyone who's donated!! 🫶🏼
05.05.2025 15:41 — 👍 3 🔁 1 💬 0 📌 0
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
02.05.2025 09:51 — 👍 0 🔁 0 💬 0 📌 0
International Society of Nephrology #ThisIsISN • World Congress of Nephrology: #ISNWCN • Young Nephrologists: #ISNyoung • #KidneyHealthMatters • #NephSky
All-in-One Social Media Management Platform
Trusted by 15,000+ agencies and brands
Registered charity (700037) whose aims are to raise funds and award grants in the North of England for research into kidney disease & transplantation. www.nckrf.org.uk
The account for the NHS Midlands Kidney Network
The leading professional body for the UK kidney community.
Dedicated to improving lives by supporting professionals in the delivery of kidney care and research.
We are taking a break from BlueSky, but don’t panic! You can continue to support our work on Facebook, Instagram, LinkedIn, X, and TikTok – see you there!
Need information? Email us at enquiries@kidneyresearchuk.org.
Improving the lives of people with kidney disease throughout the UK by offering support and advice to them, their families and kidney units. Please visit our website: www.kidneycareuk.org
Rare Disease advocate in CT. Raising Awareness and advocating for Rare Diseases patients and caregivers.
🔗 https://rarectadvocate.com - Archive and Rare Disease Resources
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
@SalfordUni Research Fellow Centre for Applied Health Research
@BPSOfficial Chartered Psychologist
@NIHRMaudsleyBRC PhD KCL Health Psychology
CJKHD, the official journal of CSN. We publish fundamental science and clinical science in the field of kidney health. Based in Canada|Turtle Island, we recognize our reparative responsibility to uplift the knowledges and expertise of Indigenous peoples.
Internist, nephrologist, transplantologist, Assistant Professor at Medical University of Lublin, #Glomcon 2021-2022 Fellow, ERA YNP Representative of Poland 🇵🇱, Board of Polish Young Transplantologists #NephSky #KidneyOmics #PharmKidney
WashU Medicine Division of Nephrology, St. Louis. Proud of our outstanding #patientcare and education. Improving health through innovation and #research.
Professor of Medicine in Nephrology and Matrix Biologist @ WashU Medicine, focused on glomerular basement membrane and Alport syndrome (+ related diseases)
Nephrologist
Fundacio Puigvert, Barcelona
President of the European Renal Association
Genetic kidney diseases lover 🧬
Obstetric physician, nephrologist, Barts Health, OHCM, Kumar and Clark
Kidney Doctor | Clinical Academic #genomics #CAKUT | Researcher @mrc-lms.bsky.social | Mum
