PSC Online and Local Support Groups

PSCers say that online support groups can literally be lifesavers because of the information and comfort they offer to fellow patients and caregivers.

The sites are available to learn more about PSC. Seek support, ask questions, and you’ll likely get just the answer you’ll find useful, from a patient’s perspective. Sites are available to caregivers and patients, and cover all topics related to PSC.

An online PSC support group was established in 1998. This is a message board (forum) on Yahoo/Health, where PSC patients and caregivers can exchange information and lend support/advice to one another:

• http://health.groups.yahoo.com/group/psc-support/

In the United Kingdom, there is a similar PSC support group that publishes a newsletter and holds an annual meeting in Oxford with Dr. Roger Chapman, a leading PSC expert:

• http://www.psc-support.demon.co.uk/

There is also a parent’s support group, especially helpful for parents of young children, as PSC presents itself differently in pediatric patients, and is treated accordingly. This group is found at:

• http://health.groups.yahoo.com/group/pscmoms/

Pre-teen kids and teens with PSC can get acquainted with others through a new online board:

• http://health.groups.yahoo.com/group/psckids-support

For post-transplant PSC patients, there is a support group with discussions based on the special needs of being post-surgical, immunosuppressed, and having an “at-risk” status. You may join this group at:

• http://health.groups.yahoo.com/group/Livertx-PSC/

To join a global group of PSCers and caregivers for social
connection, education and sharing, check out Facebook at:

• http://tinyurl.com/pscpartnersfacebook

To join the group go to facebook.com and type in (or click on) the link above.  To find other PSC Facebook groups, click on the info tab at the above address.

Thank you to the moderators of these online support groups: Tiffany K., Jonathan G., Arne M., Ivor S., Pam W., Melanie S., Ali L.T., Denise B., Tim R., Sandi P., Ellen and Chaim B.

Local/Regional PSC Support Groups

We’re expanding the number of local PSC support groups, each of which is run by a PSC family (with the exception of the Mount Sinai group in New York City). You’ll find friendship, caring, support—and information on coping and managing PSC. Check back later—because we’re adding more groups in all parts of the country. Ongoing support groups:

Connecticut group:

• Contact person: Reggie Belmont ctpsc@hotmail.com

Sacramento, CA group:

• Contact person: Jennifer Soloway Jennifer@markstivers.com

Southern chapter/Greenville, SC:

• Contact person: Carolyn B. verviersbe@gmail.com

New York City:

• Contact person: Eileen Solomon Eileen.Solomon@mountsinai.org
• (Please put “PSC” in the subject line)

San Francisco Bay Area:

• Contact person: Tom Hill tphill@1lifeplace.com

Israeli support group:

• Contact people:  Ellen and Chaim Boermeester  psc.support.il@gmail.com or hetzknasim@gmail.com

Thank you to our support group leaders.

International Affiliates

A Canadian affiliate of PSC Partners Seeking a Cure is being formed.  For more information or to help, contact Eve Jedrzejewska at eveandre@rogers.com