Online Support Groups

Brilliant. Simply brilliant. The people at the Coalition for Pulmonary Fibrosis have begun online support groups for patients, caregivers, transplants, information and grief groups. The e-mail and press release below offers all the information: You may be like many PF patients, caregivers and family members.  You may not feel up to going to an in-person support group or you may not have time to make in-person meetings. Maybe there is no support group near enough to you.  Or, like some, maybe you're not comfortable with an in-person setting to talk about your disease or your loved one's illness with PF.  The Coalition for Pulmonary Fibrosis (CPF) has many partnered support groups across the country (visit https://coalitionforpf.org/cpf_support.php to learn more).  They are a great resource for many, but they don't fill the needs of everyone all the time, simply because they require you to be there in person.   We hear you.  The CPF announces a new online support group program to add to our support group offering.   We've partnered with Breathe Support to bring this online option to our patients, their caregivers and their families.   There is a patient group, a caregiver group, a transplant group, an informational group and a grief group.  Chances are, there is one that may provide the opportunity you want to connect with others going through what you're going through - right now. Here is the listing along with the group links so you can join right away:   Available Online Support Groups: Caregiver Forum – This forum is for those who are taking care of a person suffering from PF.  The group is also open to any family member or friend of someone with PF so they can get a better sense of the process for caregivers and share information on how to best be of help.  Link to Caregiver Forum:  http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/ Patient forum – This forum is for patients who are diagnosed with PF.  Link to Patient Forum:  http://health.groups.yahoo.com/group/Breathe-Support/ PF Information Forum – This is a combined group of patients and caregivers where they can share concerns and challenges.  The group is also open to any family member or friend of someone with PF so they can get a better sense of to expect.  Link to PF Information Forum: http://groups.yahoo.com/group/Breathe-SupportInformation Transplant Forum – This exchange is for those who are investigating lung transplant as an option and who may be helped in their decision-making by information shared by others.   It is also open to caregivers and family members of anyone considering lung transplant.  Link to Transplant Forum:  http://health.groups.yahoo.com/group/Breathe-SupportLungTransplant/ Grief Forum – This forum is to help those who have lost a loved one to PF. Link to Grief Forum:  http://health.groups.yahoo.com/group/Breathe-SupportGrief/  And, though many patients love communicating via new social media platforms like Facebook, these online groups are private.  Your messages are in a safer online environment because they are closed groups - and each member is approved (and messages are seen by group members, not their friends or their friends).   We encourage you to consider joining an online support group if you cannot get to a support group in person.  See the full CPF press release below. Sincerely,  Mishka Michon, CEO of the Coalition for Pulmonary Fibrosis Please keep in mind this Breathe Support disclaimer:  All content contained on, or available through, this online support group, is for general information purposes only and is not intended as, nor should it be considered as a substitute for, professional medical advice, professional psychological advice, diagnosis or treatment.  Do not use the information on, or available through, this online support group for diagnosing or treating a medical or health condition.  The Coalition for Pulmonary Fibrosis (CPF) does not take responsibility for the efficacy of the information being exchanged here – the remarks included represent information shared for general purposes based on the personal experiences of those using the online support group.  Group members are encouraged to contact their physician for any specific information related to any condition or treatment. Coalition for Pulmonary Fibrosis Partners with Breathe Support for Online Support Groups to Address Specific Needs, Audiences Groups provide support for Pulmonary Fibrosis patients, caregivers, families  CULVER CITY, Calif., January 15, 2013 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today its partnership with Breathe Support to provides online support groups for Pulmonary Fibrosis (PF) patients, families and caregivers.  Breathe Support provides online forums for PF patients, caregivers and families and those dealing with the grief of their loss.  There are separate groups for PF patients who are investigating or awaiting lung transplantation. Breathe Support offers the support of a group with the ease of use of an online service.  Thousands of patients with PF have accessed these groups and it is an important offering given that in-person PF support groups are not available everywhere and the time and ability to travel to meetings can be a limiting factor for patients, as well.   By exchanging support in this manner, most patients are guaranteed the opportunity to talk with others.  The groups have evolved over time and they continue to grow and change based on the needs of the users. "We are pleased to partner with Breathe Support to provide a service that appeals to the needs of our patients," said Mishka Michon, Chief Executive Officer of the Coalition for Pulmonary Fibrosis.  “The online access point gives another option to patients who suffer from PF and often have limited mobility and require increasing amounts of oxygen and often experience much difficulty in getting to an in-person support group setting. It also provides support for patients, families and caregivers in a convenient forum for busy lives and schedules.” Breathe Support provides a safer online environment for patients, families and caregivers by operating only with its memberships and is not held as an “open” forum like many online social media sites like Facebook and others.  The Breathe Supportonline groups are populated by members who are approved to join the groups and are monitored and moderated by Breathe Support leaders.  “We’re here to support one another as we learn from each other about PF.  This is a safe environment where patients can share stories, concerns, fears, etc. about their PF diagnosis and living with PF,” said Taleena Koch, owner of Breathe Support and a group moderator.  “This is a forum for members and their thoughts and suggestions are important and beneficial to the group.” Available Online Support Groups: Caregiver Forum – This forum is for those who are taking care of a person suffering from PF.  The group is also open to any family member or friend of someone with PF so they can get a better sense of the process for caregivers and share information on how to best be of help.  Link to Caregiver Forum: http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/ Patient forum – This forum is for patients who are diagnosed with PF.  Link to Patient Forum:  http://health.groups.yahoo.com/group/Breathe-Support/ PF Information Forum – This is a combined group of patients and caregivers where they can share concerns and challenges.  The group is also open to any family member or friend of someone with PF so they can get a better sense of to expect.  Link to PF Information Forum: http://groups.yahoo.com/group/Breathe-SupportInformation Transplant Forum – This exchange is for those who are investigating lung transplant as an option and who may be helped in their decision-making by information shared by others.   It is also open to caregivers and family members of anyone considering lung transplant.  Link to Transplant Forum:  http://health.groups.yahoo.com/group/Breathe-SupportLungTransplant/ Grief Forum – This forum is to help those who have lost a loved one to PF. Link to Grief Forum:  http://health.groups.yahoo.com/group/Breathe-SupportGrief/  For further information about these support options, please contact the CPF atinfo@coalitionforpf.org.  The Coalition for Pulmonary Fibrosis works on a national scale to support research for a cure and to assist patients. For information or to support this important work, please contact the CPF at 1-888-222-8541, or visit www.coalitionforpf.org or visit us on Facebook or Twitter.