Center for Autoimmune Liver Disease at Cincinnati Children's Hospital

05/23/2025

A-LiNK Connections just released their Caregiver Coping Resource, a fantastic guide developed with ImproveCareNow’s parent/caregiver group, and Social Workers and Psychologists. It is packed with insights from caregivers of children with Autoimmune Liver Disease (AILD) and Inflammatory Bowel Disease (IBD), as well as supporting professionals. Check it out and share!
Caregiver Coping Resourcehttps://static1.squarespace.com/static/654542910d6d59414d622499/t/68267e36e5ceac462b23048c/1747353209731/Caregiver+Coping+Resource+-+ICN+A-LiNK+-+May+2025+Final.pdf
Patient and Family Education Manual https://static1.squarespace.com/static/654542910d6d59414d622499/t/67095b10fa31ff3f4790b300/1728666396975/A-LiNK+Patient+and+Family+Education+Manual+Vol+I+2024+-+DIGITAL+med+res_.pdf
Get Involved: Patients, Caregivers, Physicians https://www.aildnetwork.org/get-involved
A-LiNK Website: aildnetwork.org https://www.aildnetwork.org/

12/23/2024

07/22/2024

Hello Patients, Families, Friends, and Community members in the Greater Cincinnati Area!

We would like to invite you to a special benefit concert hosted by the Asian American Coalition of Ohio (AACO) in support of CALD’s critical research into autoimmune liver diseases (AIH, PSC, ASC).

The AACO youth leaders have organized an evening of live music, featuring the violin, cello, keyboard, flute, and vocals!

When: Saturday August 3rd, 2024, 6-9 PM
Where: 766 Reading Rd, Mason Ohio 45040 - Cincinnati Chinese Church

Come join us to learn more about CALD’s research, meet other community members, support CALD and the AACO, or just enjoy the music!

Make a Difference: Share your story
Have a story of hope or inspiration you'd like to share? We'd love to hear from you!
Contact us at CALD@cchmc.org and your story could be featured at the event.

Spread the word and help us raise hope for a brighter future!

We look forward to seeing you there!

05/31/2024

A RARE Opportunity!

A day of support and education for PSC children, teens, and their families!

You are invited to attend the Canadian Paediatric PSC Day from the comfort of home!

This Saturday, June 1! 9:50AM EST - 3pm EST

Whether you are Canadian or not, you are invited to join this paediatric-focused webinar, co-hosted by PSC Partners Seeking a Cure and Dr. Amanda Ricciuto from the Hospital for Sick Children, and in partnership with Toronto Centre for Liver Disease and Ajmera Transplant Center at University Health Network!

Register for Webinar Here https://us02web.zoom.us/webinar/register/WN_OdvgGZ5dRbCnIilwr5nppA?fbclid=IwZXh0bgNhZW0CMTAAAR0AogNwXfPddvo_Pt7JHhw_nAlbxLeeBxworREd2Cn8ds6M8SYzD_NTd5c_aem_AQBxSy5iq-AfxvHrPwOooec0x2q-Ate6PHjcFvCdeLYUaAWdr0EQH9xQIynIgBI54nhqIRpZFHGTp8Aj8daY0gs8 #/registration

This event is designed for children and teens with PSC and their families. French and ASL interpretation will be available to online attendees.

We encourage everyone in the PSC community to attend this special event that brings together PSC children & teens, their families, and PSC experts.

Medical Speakers:

Sara Ahola Kohut, PhD - Psychologist and Health Clinician Scientist with the Medical Psychiatry Alliance (MPA) at The Hospital for Sick Children (SickKids) and an Assistant Professor with the University of Toronto. Dr. Kohut’s program of research develops therapies and programs to support the quality of life of children with chronic health conditions and their families. These therapies focus on supporting the physical, emotional, and social health of these children.

Gary Bader, PhD - the Ontario Research Chair in Biomarkers of Disease in the Department of Molecular Genetics. His research focuses on systems biology at the cell and tissue level. He is also a Professor at The Donnelly Centre at the University of Toronto and an expert in Computational Biology. Dr. Bader is Principal Investigator on a four-year patient-partnered paediatric PSC research study with PSC Partners.

Gideon Hirschfield, MB BChir, PhD, FRCP - the inaugural Lily and Terry Horner Chair in Autoimmune Liver Disease, at the University of Toronto. He is the Director of Autoimmune Liver Disease Program and the Director of Clinical Practice at Toronto Centre for Liver Disease, Francis Family Liver Clinic and specializes in Primary Biliary Cholangitis, Primary Sclerosing Cholangitis, Autoimmune Hepatitis and Transplant.

Sonya MacParland, PhD - Senior Scientist in the Ajmera Transplant Centre at UHN and an Associate Professor in the University of Toronto's department of Laboratory Medicine and Pathobiology and the department of Immunology. Dr. MacParland holds a Canada Research Chair Tier 2 in Liver Immunobiology and is the organizing Principal Investigator on a four-year patient-partnered paediatric PSC research study with PSC Partners.

Amrita Mundh, MN, NP-Peds - specializing in paediatric PSC care in the Division of Gastroenterology, Hepatology and Nutrition at the Hospital for Sick Children. She completed her Master of Nursing and Pediatric Nurse Practitioner program at the University of Toronto.

Amanda Ricciuto MD, PhD, FRCP - staff gastroenterologist in the Division of Gastrology and Hepatology & Nutrition at the Hospital for Sick Children (SickKids). Her areas of specialty included pediatric inflammatory bowel disease and IBD-associated liver disease, particularly primary sclerosing cholangitis. She is also an Assistant Professor in the Department of Pediatrics at the University of Toronto and Principal Investigator on a four-year patient-partnered paediatric PSC research study with PSC Partners.

PSC Partners Seeking a Cure Speakers:

Joanne Hatchett, RN, FNP, ACHPN - Medical Science Liaison for PSC Partners seeking a Cure

Jessica Travis - Event planner, PSC Partners Seeking a Cure

Mary Vyas, MSc, MA - President and co-founder of PSC Partners Seeking a Cure Canada, Patient Registry Strategist for PSC Partners Seeking a Cure

Register for Webinar Here https://us02web.zoom.us/webinar/register/WN_OdvgGZ5dRbCnIilwr5nppA?fbclid=IwZXh0bgNhZW0CMTAAAR0AogNwXfPddvo_Pt7JHhw_nAlbxLeeBxworREd2Cn8ds6M8SYzD_NTd5c_aem_AQBxSy5iq-AfxvHrPwOooec0x2q-Ate6PHjcFvCdeLYUaAWdr0EQH9xQIynIgBI54nhqIRpZFHGTp8Aj8daY0gs8 #/registration

05/13/2024

We are excited to share a new publication, a multicenter phase 3 clinical trial studying the effects of Maralixibat in PFIC. Maralixibat is a non-steroidal, pharmacological treatment, that inhibits the ileal bile acid transporter (IBAT). This phase 3 clinical trial found that across several PFIC types, patients on Maralixibat had improved cholestatic pruritus, markers of sleep disturbances, and predictors of native liver survival (serum bile acids and total bilirubin). These findings are not limited to BSEP deficient PFIC, but also include patients with a broad range of PFIC types and characteristics and has the potential to improve the standard of care in patients with PFIC, regardless of genotype.

Congrats to Dr. Miethke’s team here in Cincinnati, and their collaborators at 29 other hospitals!

You can access the proof for free using this share link:

Progressive familial intrahepatic cholestasis (PFIC) is a group of autosomal recessive disorders, the most prevalent being BSEP deficiency, resulting …

04/29/2024

On June 1st PSC Partners is hosting a Canadian paediatric PSC patient/family event, co-hosted with Dr. Amanda Ricciuto from the Hospital for Sick Children, and with the partnership of the Ajmera Transplant Centre and the Toronto Centre for Liver Disease of UHN. The event will be held in-person in Toronto and live-streamed for virtual attendance. Travelships to offset the expense of travel are available on a first-come, first-served basis to families living with PSC. The event will offer live French and ASL translation and free onsite childcare (for children 5-12).

REGISTRATION LINK: https://go.pscpartners.org/RegisterPaedsDay2024

The agenda will include basics of PSC, observational paediatric studies, single-cell paediatric PSC research ongoing at UHN/SickKids, mental health, and lots of Q&A time with experts. Importantly, there will be time for patients and their caregivers/families to meet with their peers and find support among the PSC community. This event is open to all paediatric PSC patients under 18 and their families.

PSC Partners Seeking a Cure Canada is a Canadian registered charity with the mission to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease. This Canadian registered charity was formed in 2015 and, together with US PSC Partners, shares a vision of a world where a PSC diagnosis comes with a cure.

Please reach out for more information! office@pscpartners.ca

03/29/2024

DON'T MISS OUT! Registration deadline is April 1! Use this link to register today: www.bit.ly/CALD2024

April 1 is also the deadline on "group rates" for the hotels. More information (including a preliminary agenda) is available at the link above!

We still have travel awards and scholarships available for patients, families & advocates wanting to travel in, and free registration. Email or call for information: CALD@cchmc.org, 513-517-0580

PSC Partners Seeking a Cure Autoimmune Hepatitis Association ImproveCareNow

03/27/2024

Thanks in advance to all speakers who will share their expertise at the 2024 PALD Symposium. Swipe to see the topics lined up for this year's conversation.

For a complete agenda, register today! Registration deadline is April 1: www.bit.ly/CALD2024

PSC Partners Seeking a Cure Autoimmune Hepatitis Association ImproveCareNow

03/25/2024

𝗨𝗻𝘄𝗶𝗻𝗱 𝗮𝗻𝗱 𝗖𝗼𝗻𝗻𝗲𝗰𝘁 𝗔𝗳𝘁𝗲𝗿 𝘁𝗵𝗲 𝗔𝗜𝗟𝗗 𝗦𝘆𝗺𝗽𝗼𝘀𝗶𝘂𝗺
We invite you to join us for a relaxed social gathering! After two days of learning and sharing, we seek to foster connections and ensure everyone departs with a sense of accomplishment, a positive outlook, and lasting memories.

This year, we're thrilled to host the reception at a truly special location: the National Underground Railroad Freedom Center in Cincinnati. This iconic institution celebrates stories of courage, collaboration, and unwavering determination, themes that resonate deeply with the AILD community.

𝗖𝗼𝗻𝗻𝗲𝗰𝘁 𝗮𝗻𝗱 𝗦𝘂𝗽𝗽𝗼𝗿𝘁, 𝗘𝘃𝗲𝗻 𝗪𝗶𝘁𝗵𝗼𝘂𝘁 𝗔𝘁𝘁𝗲𝗻𝗱𝗶𝗻𝗴 𝘁𝗵𝗲 𝗦𝘆𝗺𝗽𝗼𝘀𝗶𝘂𝗺
We encourage your participation in this opportunity to build relationships and show your support, whether you're a full symposium attendee or simply want to connect with the AILD community. You're warmly welcome at this reception!

To learn more about joining the reception and the availability of travel awards, scholarships, and free registration, please contact CALD@cchmc.org or call 513-517-0580.

𝗥𝗲𝗴𝗶𝘀𝘁𝗲𝗿 𝗯𝘆 𝗔𝗽𝗿𝗶𝗹 𝟭: www.bit.ly/CALD2024

03/21/2024

Don't miss out on this year's symposium! The Registration deadline is April 1! Use this link to register today: www.bit.ly/CALD2024

April 1 is also the deadline on "group rates" for the hotels. More information (including a preliminary agenda) is available at the link above!

We still have travel awards and scholarships available for patients, families & advocates wanting to travel in, and free registration. Email or call for information: CALD@cchmc.org, 513-517-0580

03/13/2024

We are thrilled to announce that our team had an exceptional showing at the DHC Symposium, thanks to the unwavering support and assistance of our CALD community. We would like to take a moment to commend our talented scientists on their remarkable posters, which are as follows:

- Zi Yang: “Identifying pathogenic cell populations with genetic variant predisposition in primary sclerosing cholangitis through single-cell multiome profiling”

- Annika Yang vom Hofe: “Pharmacological Activation Of FXR Decreases Viral Replication And Reduces Bile Duct Obstruction In Experimental Biliary Atresia”

- Liva Pfuller: “iPSC Derived Liver Organoids from a Patient with Autoimmune Hepatitis and A20-Haploinsufficiency Recapitulate an Inflammatory and Profibrogenic Liver Disease Phenotype"

01/31/2024

It is with great pleasure that we invite you to the 7th Pediatric Autoimmune Liver Disease Symposium!

Join us IN PERSON or VIRTUAL | Friday-Saturday, April 12-13 2024

For information and registration visit: www.bit.ly/CALD2024

By attending, you’ll have a unique opportunity to interact with a diverse group of ALD-informed individuals, including patients & families, scientists, physicians & healthcare providers.

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What you can expect from this year's conference:
medicine and care for autoimmune liver disease patients
Spotlight on patient and caregiver advocacy and patient-centered improvement‌ efforts
Advances in the learning health network A-LiNK