FOP Friends
@fopfriends.bsky.social
We are dedicated to supporting those living with the rare genetic condition FOP and raising awareness and much needed funds to support the research into a treatment and a cure. We also support those living with the rare condition POH.
🍂Wishing our friends who celebrate a day filled with love and laughter, family and friends! 🦃
🧡Happy Thanksgiving!🧡
🧡Happy Thanksgiving!🧡
November 27, 2025 at 9:01 AM
🍂Wishing our friends who celebrate a day filled with love and laughter, family and friends! 🦃
🧡Happy Thanksgiving!🧡
🧡Happy Thanksgiving!🧡
🌺On Remembrance Day, we pause to honour the courage and sacrifice of those who have served to protect our country and our values.
🌺We also thank all those who are serving today, both at home and abroad.
🌺 #RemembranceDay #LestWeForget #WeWillRememberThem
🌺We also thank all those who are serving today, both at home and abroad.
🌺 #RemembranceDay #LestWeForget #WeWillRememberThem
November 11, 2025 at 11:02 AM
🌺On Remembrance Day, we pause to honour the courage and sacrifice of those who have served to protect our country and our values.
🌺We also thank all those who are serving today, both at home and abroad.
🌺 #RemembranceDay #LestWeForget #WeWillRememberThem
🌺We also thank all those who are serving today, both at home and abroad.
🌺 #RemembranceDay #LestWeForget #WeWillRememberThem
🎃 Wishing everyone a fang-tastic Halloween! 👻
🔮Hope your night is full of treats and absolutely no hocus pocus.
🧡We would love to see your spook-tacular costumes!
👇Drop them in the comments below!
🔮Hope your night is full of treats and absolutely no hocus pocus.
🧡We would love to see your spook-tacular costumes!
👇Drop them in the comments below!
October 31, 2025 at 9:01 AM
🎃 Wishing everyone a fang-tastic Halloween! 👻
🔮Hope your night is full of treats and absolutely no hocus pocus.
🧡We would love to see your spook-tacular costumes!
👇Drop them in the comments below!
🔮Hope your night is full of treats and absolutely no hocus pocus.
🧡We would love to see your spook-tacular costumes!
👇Drop them in the comments below!
💜WIshing our friends and families who celebrate a Happy Diwali!💛
🌟May this Festival of Lights bring you happiness, peace and prosperity.🕯️
🌟May this Festival of Lights bring you happiness, peace and prosperity.🕯️
October 20, 2025 at 12:02 PM
💜WIshing our friends and families who celebrate a Happy Diwali!💛
🌟May this Festival of Lights bring you happiness, peace and prosperity.🕯️
🌟May this Festival of Lights bring you happiness, peace and prosperity.🕯️
CamRARE’s #RAREsummit25 is packed with energy and ideas!
From inspiring speakers to hands-on workshops
💡 Digital Twins in Rare Diseases
🧬 Naming Rare Conditions: Finding the Right Words
Be part of the conversation shaping rare: camraredisease.org/raresummit25
#RareDisease #PatientVoice
From inspiring speakers to hands-on workshops
💡 Digital Twins in Rare Diseases
🧬 Naming Rare Conditions: Finding the Right Words
Be part of the conversation shaping rare: camraredisease.org/raresummit25
#RareDisease #PatientVoice
October 20, 2025 at 9:01 AM
CamRARE’s #RAREsummit25 is packed with energy and ideas!
From inspiring speakers to hands-on workshops
💡 Digital Twins in Rare Diseases
🧬 Naming Rare Conditions: Finding the Right Words
Be part of the conversation shaping rare: camraredisease.org/raresummit25
#RareDisease #PatientVoice
From inspiring speakers to hands-on workshops
💡 Digital Twins in Rare Diseases
🧬 Naming Rare Conditions: Finding the Right Words
Be part of the conversation shaping rare: camraredisease.org/raresummit25
#RareDisease #PatientVoice
Join CamRARE for their #RAREsummit25 on 6 Nov as they mark 10 years of progress.
The summit will host a diverse lineup of researchers, clinicians, industry leaders, and patient voices will share insights and shape what comes next.
www.camraredisease.org/raresummit25/
The summit will host a diverse lineup of researchers, clinicians, industry leaders, and patient voices will share insights and shape what comes next.
www.camraredisease.org/raresummit25/
October 13, 2025 at 8:01 AM
Join CamRARE for their #RAREsummit25 on 6 Nov as they mark 10 years of progress.
The summit will host a diverse lineup of researchers, clinicians, industry leaders, and patient voices will share insights and shape what comes next.
www.camraredisease.org/raresummit25/
The summit will host a diverse lineup of researchers, clinicians, industry leaders, and patient voices will share insights and shape what comes next.
www.camraredisease.org/raresummit25/
The countdown is on ⏳ #RAREsummit25 is just a month away (6 Nov)!
Our agenda is packed: diverse voices, patient-driven insights & bold innovation.
https://loom.ly/a7DFP3k
Join us + keep the conversations going over dinner! 💜
Grab your ticket + dinner spot now!
Our agenda is packed: diverse voices, patient-driven insights & bold innovation.
https://loom.ly/a7DFP3k
Join us + keep the conversations going over dinner! 💜
Grab your ticket + dinner spot now!
October 6, 2025 at 9:01 AM
The countdown is on ⏳ #RAREsummit25 is just a month away (6 Nov)!
Our agenda is packed: diverse voices, patient-driven insights & bold innovation.
https://loom.ly/a7DFP3k
Join us + keep the conversations going over dinner! 💜
Grab your ticket + dinner spot now!
Our agenda is packed: diverse voices, patient-driven insights & bold innovation.
https://loom.ly/a7DFP3k
Join us + keep the conversations going over dinner! 💜
Grab your ticket + dinner spot now!
💙It was great to join the Northern Ireland Rare Disease Partnership yesterday afternoon.
🧡Looking forward to connecting with other patient organisations in the rare disease space, and learning how we can better support our families.
#StrongerTogether
🧡Looking forward to connecting with other patient organisations in the rare disease space, and learning how we can better support our families.
#StrongerTogether
October 3, 2025 at 3:05 PM
💙It was great to join the Northern Ireland Rare Disease Partnership yesterday afternoon.
🧡Looking forward to connecting with other patient organisations in the rare disease space, and learning how we can better support our families.
#StrongerTogether
🧡Looking forward to connecting with other patient organisations in the rare disease space, and learning how we can better support our families.
#StrongerTogether
Who might you meet at CamRARE's #RAREsummit25? 👋
Researchers, clinicians, biopharma, tech innovators, patient groups + those with lived experience.
Lots of opportunities to network & connect across the rare disease community.
Be part of the conversation.
Tickets: https://bit.ly/RAREsummit25_ticket
Researchers, clinicians, biopharma, tech innovators, patient groups + those with lived experience.
Lots of opportunities to network & connect across the rare disease community.
Be part of the conversation.
Tickets: https://bit.ly/RAREsummit25_ticket
October 3, 2025 at 12:20 PM
Who might you meet at CamRARE's #RAREsummit25? 👋
Researchers, clinicians, biopharma, tech innovators, patient groups + those with lived experience.
Lots of opportunities to network & connect across the rare disease community.
Be part of the conversation.
Tickets: https://bit.ly/RAREsummit25_ticket
Researchers, clinicians, biopharma, tech innovators, patient groups + those with lived experience.
Lots of opportunities to network & connect across the rare disease community.
Be part of the conversation.
Tickets: https://bit.ly/RAREsummit25_ticket
📣Please join us in giving a big SHOUT OUT to #TeamFOPFriends for their incredible effort at the Great North Run yesterday!🎉
🌟You all are absolute superstars.🌟
🙌A huge thank you too, to their incredibly generous families and friends who have sponsored them.
🌟You all are absolute superstars.🌟
🙌A huge thank you too, to their incredibly generous families and friends who have sponsored them.
September 8, 2025 at 1:06 PM
📣Please join us in giving a big SHOUT OUT to #TeamFOPFriends for their incredible effort at the Great North Run yesterday!🎉
🌟You all are absolute superstars.🌟
🙌A huge thank you too, to their incredibly generous families and friends who have sponsored them.
🌟You all are absolute superstars.🌟
🙌A huge thank you too, to their incredibly generous families and friends who have sponsored them.
🏃Please join us in wishing Hope, Jane, Mick, Rebecca, Richard and Simon all the best as they take on the #GreatNorthRun today for FOP Friends.
😍A big shout out too, to all their amazing families and friends who have so generously sponsored them!
🥇Go #TeamFOPFriends! 🙌
😍A big shout out too, to all their amazing families and friends who have so generously sponsored them!
🥇Go #TeamFOPFriends! 🙌
September 7, 2025 at 8:00 AM
🏃Please join us in wishing Hope, Jane, Mick, Rebecca, Richard and Simon all the best as they take on the #GreatNorthRun today for FOP Friends.
😍A big shout out too, to all their amazing families and friends who have so generously sponsored them!
🥇Go #TeamFOPFriends! 🙌
😍A big shout out too, to all their amazing families and friends who have so generously sponsored them!
🥇Go #TeamFOPFriends! 🙌
🎉Our summer 🌻newsletter is out!
🦋We're delighted to be able to bring you news from the past couple of months.
👉Check it out here: https://loom.ly/X9l7VNQ
🦋We're delighted to be able to bring you news from the past couple of months.
👉Check it out here: https://loom.ly/X9l7VNQ
August 8, 2025 at 6:02 PM
🎉Our summer 🌻newsletter is out!
🦋We're delighted to be able to bring you news from the past couple of months.
👉Check it out here: https://loom.ly/X9l7VNQ
🦋We're delighted to be able to bring you news from the past couple of months.
👉Check it out here: https://loom.ly/X9l7VNQ
🧡In honour of #InternationalFriendshipDay...🌍
📸share your photos of you and your besties! 👇
😍Maybe it's people who you've met on your FOP journey....maybe it's friends from across the miles.... maybe it's friends who just make your day that little bit brighter...
🎉Let's celebrate friends!🎉
📸share your photos of you and your besties! 👇
😍Maybe it's people who you've met on your FOP journey....maybe it's friends from across the miles.... maybe it's friends who just make your day that little bit brighter...
🎉Let's celebrate friends!🎉
July 30, 2025 at 1:06 PM
🧡In honour of #InternationalFriendshipDay...🌍
📸share your photos of you and your besties! 👇
😍Maybe it's people who you've met on your FOP journey....maybe it's friends from across the miles.... maybe it's friends who just make your day that little bit brighter...
🎉Let's celebrate friends!🎉
📸share your photos of you and your besties! 👇
😍Maybe it's people who you've met on your FOP journey....maybe it's friends from across the miles.... maybe it's friends who just make your day that little bit brighter...
🎉Let's celebrate friends!🎉
Today we celebrate 🧡International Friendship Day! 🌍
🦓Living with a rare condition such as FOP or POH can be isolating.
🙏We are thankful for the friends we have made around the world who stand by us and with us each and every day.
😍Through collaboration we are making a real difference.
🦓Living with a rare condition such as FOP or POH can be isolating.
🙏We are thankful for the friends we have made around the world who stand by us and with us each and every day.
😍Through collaboration we are making a real difference.
July 30, 2025 at 11:01 AM
Today we celebrate 🧡International Friendship Day! 🌍
🦓Living with a rare condition such as FOP or POH can be isolating.
🙏We are thankful for the friends we have made around the world who stand by us and with us each and every day.
😍Through collaboration we are making a real difference.
🦓Living with a rare condition such as FOP or POH can be isolating.
🙏We are thankful for the friends we have made around the world who stand by us and with us each and every day.
😍Through collaboration we are making a real difference.
⛰️A huge CONGRATULATIONS to Joe and his friends who have successfully reached the summit of Snowdon!
🎯Joe has smashed his fundraising target, and some of his friends have also collected monies and donated them to Joe's total.
🧡Thank you, from everyone affected by FOP! You make a great team!
🎯Joe has smashed his fundraising target, and some of his friends have also collected monies and donated them to Joe's total.
🧡Thank you, from everyone affected by FOP! You make a great team!
July 26, 2025 at 6:30 PM
⛰️A huge CONGRATULATIONS to Joe and his friends who have successfully reached the summit of Snowdon!
🎯Joe has smashed his fundraising target, and some of his friends have also collected monies and donated them to Joe's total.
🧡Thank you, from everyone affected by FOP! You make a great team!
🎯Joe has smashed his fundraising target, and some of his friends have also collected monies and donated them to Joe's total.
🧡Thank you, from everyone affected by FOP! You make a great team!
📣A big shout out to Joe this morning, who is taking on Snowdonia in honour of his daughter, Monroe.
⛰️We're sending all our support to him and can't wait to see the photos of his triumph at the summit.
🧡A massive thank you to everyone who has so generously sponsored Joe on this journey.
⛰️We're sending all our support to him and can't wait to see the photos of his triumph at the summit.
🧡A massive thank you to everyone who has so generously sponsored Joe on this journey.
July 26, 2025 at 10:26 AM
📣A big shout out to Joe this morning, who is taking on Snowdonia in honour of his daughter, Monroe.
⛰️We're sending all our support to him and can't wait to see the photos of his triumph at the summit.
🧡A massive thank you to everyone who has so generously sponsored Joe on this journey.
⛰️We're sending all our support to him and can't wait to see the photos of his triumph at the summit.
🧡A massive thank you to everyone who has so generously sponsored Joe on this journey.
🎡We have place available for the London Landmarks Half Marathon 2026!
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
July 21, 2025 at 12:08 PM
🎡We have place available for the London Landmarks Half Marathon 2026!
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🎡We have place available for the London Landmarks Half Marathon 2026!
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
July 17, 2025 at 8:01 AM
🎡We have place available for the London Landmarks Half Marathon 2026!
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
🥇Secure your place now for just £35 (+fee) and a £300 sponsorship pledge.
🏃Don't delay!
⌛Reserve your place now!👇
👉 https://runforcharity.com/fop-friends/london-landmarks-half-marathon/registration
Thursday 24th July 2025 @ 8pm
💊In our second webinar, we aim to shed light on the crucial steps involved in making a new FOP medicine available to patients on the NHS in the UK. It will explain the distinct roles of key regulatory and funding bodies.
✅Register now: https://loom.ly/yB-rsZ8
💊In our second webinar, we aim to shed light on the crucial steps involved in making a new FOP medicine available to patients on the NHS in the UK. It will explain the distinct roles of key regulatory and funding bodies.
✅Register now: https://loom.ly/yB-rsZ8
July 16, 2025 at 7:01 AM
Thursday 24th July 2025 @ 8pm
💊In our second webinar, we aim to shed light on the crucial steps involved in making a new FOP medicine available to patients on the NHS in the UK. It will explain the distinct roles of key regulatory and funding bodies.
✅Register now: https://loom.ly/yB-rsZ8
💊In our second webinar, we aim to shed light on the crucial steps involved in making a new FOP medicine available to patients on the NHS in the UK. It will explain the distinct roles of key regulatory and funding bodies.
✅Register now: https://loom.ly/yB-rsZ8
🎉We woke up to a lovely surprise this morning - a generous donation!
😎However, the donor has chosen to remain anonymous!
🦋This is totally ok and we always respect the wishes of our donor.
🌃If you are reading this and you are the kind midnight donor, THANK YOU!
🌞Have a great Tuesday everyone!
😎However, the donor has chosen to remain anonymous!
🦋This is totally ok and we always respect the wishes of our donor.
🌃If you are reading this and you are the kind midnight donor, THANK YOU!
🌞Have a great Tuesday everyone!
July 15, 2025 at 11:01 AM
🎉We woke up to a lovely surprise this morning - a generous donation!
😎However, the donor has chosen to remain anonymous!
🦋This is totally ok and we always respect the wishes of our donor.
🌃If you are reading this and you are the kind midnight donor, THANK YOU!
🌞Have a great Tuesday everyone!
😎However, the donor has chosen to remain anonymous!
🦋This is totally ok and we always respect the wishes of our donor.
🌃If you are reading this and you are the kind midnight donor, THANK YOU!
🌞Have a great Tuesday everyone!
🌞Harry's dad Phil kept cool by taking on the 7.5 mile open water Chillswim Ullswater Swim Challenge.🏊♂️
🥉Phil was spurred on by his son's recent diagnosis of FOP.
💙Phil did Harry proud and completed the challenge in 3 hours and 18 mins.
😍A huge thankyou to Phil for taking the plunge
🥉Phil was spurred on by his son's recent diagnosis of FOP.
💙Phil did Harry proud and completed the challenge in 3 hours and 18 mins.
😍A huge thankyou to Phil for taking the plunge
July 14, 2025 at 11:30 AM
🌞Harry's dad Phil kept cool by taking on the 7.5 mile open water Chillswim Ullswater Swim Challenge.🏊♂️
🥉Phil was spurred on by his son's recent diagnosis of FOP.
💙Phil did Harry proud and completed the challenge in 3 hours and 18 mins.
😍A huge thankyou to Phil for taking the plunge
🥉Phil was spurred on by his son's recent diagnosis of FOP.
💙Phil did Harry proud and completed the challenge in 3 hours and 18 mins.
😍A huge thankyou to Phil for taking the plunge
💙Wishing our friends across the pond a Happy 4th July❤️
🤍Enjoy the fireworks, the friends, and the fun!
🤍Enjoy the fireworks, the friends, and the fun!
July 4, 2025 at 12:05 PM
💙Wishing our friends across the pond a Happy 4th July❤️
🤍Enjoy the fireworks, the friends, and the fun!
🤍Enjoy the fireworks, the friends, and the fun!
🇨🇦Wishing our wonderful friends in Canada a fantastic Canada Day!
🍁Joyeuse Fête du Canada!
🍁Joyeuse Fête du Canada!
July 1, 2025 at 9:01 AM
🇨🇦Wishing our wonderful friends in Canada a fantastic Canada Day!
🍁Joyeuse Fête du Canada!
🍁Joyeuse Fête du Canada!
🦋We're just one year away from the 6th FOP Friends Conference and Family Gathering! 🗓️
📍 Radisson Blu Hotel, Manchester Airport
🗓️ 15–17 May 2026
👀Stay tuned for more details.
😍We can't wait to see you there!🎬Why not relieve some of the best bits of 2025: loom.ly/LpuUlUU
📍 Radisson Blu Hotel, Manchester Airport
🗓️ 15–17 May 2026
👀Stay tuned for more details.
😍We can't wait to see you there!🎬Why not relieve some of the best bits of 2025: loom.ly/LpuUlUU
May 29, 2025 at 9:00 AM
🦋We're just one year away from the 6th FOP Friends Conference and Family Gathering! 🗓️
📍 Radisson Blu Hotel, Manchester Airport
🗓️ 15–17 May 2026
👀Stay tuned for more details.
😍We can't wait to see you there!🎬Why not relieve some of the best bits of 2025: loom.ly/LpuUlUU
📍 Radisson Blu Hotel, Manchester Airport
🗓️ 15–17 May 2026
👀Stay tuned for more details.
😍We can't wait to see you there!🎬Why not relieve some of the best bits of 2025: loom.ly/LpuUlUU
✈️An early start this morning for Chris as he headed off to Amsterdam for #iDR25.
💊Entitled Medicines Reimagined - Unlocking the potential of existing drugs for patient benefit, the conference aims to advance the field of drug repurposing by bringing together key opinion leaders.📰Stay tuned
💊Entitled Medicines Reimagined - Unlocking the potential of existing drugs for patient benefit, the conference aims to advance the field of drug repurposing by bringing together key opinion leaders.📰Stay tuned
May 6, 2025 at 9:15 AM
✈️An early start this morning for Chris as he headed off to Amsterdam for #iDR25.
💊Entitled Medicines Reimagined - Unlocking the potential of existing drugs for patient benefit, the conference aims to advance the field of drug repurposing by bringing together key opinion leaders.📰Stay tuned
💊Entitled Medicines Reimagined - Unlocking the potential of existing drugs for patient benefit, the conference aims to advance the field of drug repurposing by bringing together key opinion leaders.📰Stay tuned