Groups
Group |
Description | Manager | Topics | Members | Join Link |
|---|---|---|---|---|---|
| Accredo Patients |
Patients who have Accredo for their gamma and supplies |
3 | 49 | Join | |
| Alabama IDF Friends Group |
A group for patients and their families to exchange information and support |
4 | 11 | Join | |
| Arizona IDF Friends Group |
This group is for patients and family of patients in Arizona |
8 | 15 | Join | |
| Arkansas IDF Group |
NW Arkansas sufferers from IDF and wanting support and help access insurance coverage for treatment |
1 | Join | ||
| BioScripts patients |
Experience or new abotut BioScripts |
2 | Join | ||
| California |
A place for Californians to gather and share and make friends |
14 | 52 | Join | |
| Canadian PIDD Patients |
A group for patients who live in Canada. |
1 | Request membership | ||
| Caremark customers |
People who get their medication through Caremark |
5 | 24 | Join | |
| Central Florida Group |
for patients and thier families who live in central florida |
1 | 11 | Join | |
| Central Florida Support Group |
Support group for Individuals with PIDD |
1 | 1 | Request membership | |
| Chronic Pain Suffers |
A safe but off main forum place to vent and share what it is like to live with Chronic pain |
6 | 28 | Request membership | |
| CIDD Patients |
For patients and families with Combined Immune Deficiency Disease |
5 | 27 | Join | |
| Cleveland Area |
Cleveland area patients and families |
15 | Join | ||
| Complete DiGeorge-Thymus Transplant |
This group is for parents/families who have children who have had a thymus transplant or will be getting the transplant. |
1 | Request membership | ||
| Connecticut |
A Place for Connecticut Residents to gather |
5 | 10 | Join | |
| DE PIDD Group |
For PIDD patients and their families who live in, work in, or know where the First State is! |
2 | 11 | Join | |
| Gamunex Direct customers |
Gamunex Direct also known as Centric Health Resources - a specialty pharmacy? |
1 | 6 | Join | |
| Georgia PIDD |
Support for PIDD in the state of Georgia |
8 | 14 | Join | |
| Hizentra |
Patients and family members to share experiences with Hizentra |
6 | 38 | Join | |
| Houston Area PIDD |
Houston Area PID Patients or Parents of PID Patients |
3 | 12 | Join | |
| Houston Texas Adult On-set Hypogammaglobulinemia/ Common Variable |
I have been hoping a Houston area group would form for friendship and support. |
3 | Join | ||
| Hyper IgE or Jobs Disease |
Families w/ one or more diagnosed w/ Hyper IgE Syndrome / Jobs Syndrome |
2 | 18 | Join | |
| IDF Kentuckiana PIDD Support |
A place for Kentuckianas PIDDers to come and meet and share experiences |
7 | 13 | Request membership | |
| Illinios PIDD group |
A network for PIDD patients/caregivers from Illinois |
11 | 37 | Join | |
| Iowa IDF support group |
To provide support to patients |
3 | 7 | Join | |
| IVIG Side Effects in Children |
Anyone have children receiving IVIG and do they have any side effects? |
1 | 7 | Join | |
| Kansas/Missouri IDF Support Group |
This group is for Kansas and Missouri PIDD patients and family- all are welcome |
7 | 31 | Join | |
| late onset diagnosis CVID |
Twenty years of infections and surgeries before put on IVIG |
7 | 22 | Join | |
| Louisiana PIDD |
For PIDD patients and families in Louisiana or Southern Mississippi |
12 | Join | ||
| MA PIDD Patients |
A way to connect those affected with PIDD in MA |
2 | 24 | Join | |
| Maryland Patients |
For patients who live in the "Old Line State" |
3 | 16 | Join | |
| Medicare Issues and PIDDs |
Positive and Negatives of having Medicare |
9 | 35 | Request membership | |
| Michigan IDF Friends Group |
Michigan patient and caregiver group |
8 | 18 | Join | |
| Minnesota Families with PIDD |
Minnesota families dealing with PIDD |
1 | 19 | Join | |
| NC IDF Friends Group |
This group is for support for patients, families and friends in North Carolina. |
7 | 18 | Join | |
| New England PIDD |
For anyone in Maine, Massachusetts, New Hampshire, Rhode Island, Vermont |
1 | 18 | Join | |
| New Hampshire PIDD |
A place to chat with people from the same state and to share stories, etc. Just a place to meet people who understand and are near by. |
1 | Join | ||
| New Jersey PID Patients and Friends |
A Group for New Jersey Patients, Families and Friends |
2 | 20 | Join | |
| New Mexico PI Patients and Friends |
No, we're not part of Mexico. Yes, we are part of the United States. |
2 | 4 | Join | |
| New Yorker's with PIDD |
Do you live in New York or Consider Yourself a New Yorker and have a Primary Immune Deficiency? If so...Join! |
18 | Join | ||
| NIH patients |
This is a place for those of us who are "lucky" enough to be or who are going to be patients at the NIH clinical center. |
1 | 6 | Request membership | |
| North Texas PIDD Connection |
Connecting those in the Greater Dallas/Fort Worth Texas area |
2 | 16 | Join | |
| North West |
Connecting folks in Idaho, Montana, Washington, Oregon, Utah |
2 | 13 | Join | |
| Nurses |
A place for us to gather |
16 | 13 | Closed | |
| Ohio - Columbus area |
OPEN TO ALL COLUMBUS AREA PATIENTS AND FAMILIES |
1 | 13 | Join | |
| Oklahoma PIDD group |
Anyone with a PIDD that lives in Oklahoma |
3 | 11 | Join | |
| PA PIDD Patients and Friends |
A group for PIDD patients, family members, and friends living in the state of Pennsylvania |
2 | 18 | Join | |
| parent group |
this group is for all parents who have a child with a pid |
22 | 101 | Join | |
| Parents with school issues and how to deal with a school age child with a PIDD |
Place to discuss what works and what doesn't regarding school staff/administration and how the child feels. |
7 | 63 | Join | |
| PIDD & Emotions |
A place to discuss the many issues PIDDs and the emotional aspects |
26 | 70 | Request membership | |
| PIDD parents with young children |
A group for mothers and fathers diagnosed with a PIDD who have the challenge of keeping up with young children. |
3 | 29 | Request membership | |
| PIDD/Emotions Part 2 |
A place to discuss issues around PIDD and how id affects us emotionally |
6 | 45 | Request membership | |
| Rhode Island Primary Immune Deficiency Disease Support Group |
Support for Rhode Island and local MA area! |
1 | 11 | Join | |
| Rutgers University Community (Alumni, Students, etc.) with PIDD |
Are you an Alumni or Student of Rutgers University with a Primmary Immune Deficiency? If so...Join! |
2 | Join | ||
| Singles |
A place to find new friends, who are alone and facing PIDDs as parents or patients |
1 | 5 | Closed | |
| Sinus survival |
A group for sinus sufferers |
4 | 18 | Request membership | |
| South Florida Group |
Patients and families living in South Florida |
10 | 31 | Join | |
| Southwest Washington and Portland Metro area PIDD group |
Patients, parents and caregivers - PIDD in all forms. Support, friendship and knowledge is shared. |
1 | 2 | Join | |
| Specific Antibody DeficiencySubclass IgG Deficiency |
A group that focuses on the care and support of children/adults with Specific Antibody Deficiency or Subclass IgG Deficiency |
1 | 3 | Request membership | |
| Spouses of PIDD Patients |
This is a group for spouses and significant others of PIDD patients |
1 | 4 | Request membership | |
| Tennessee PIDD Support Group |
This group for patients and their families who live in the Volunteer State |
16 | 19 | Join | |
| The Bone Marrow Transplant Experience |
A group for those who wish to share their experiences traveling the road of BMT. |
2 | 12 | Join | |
| THINK ZEBRA! Fundraising Initiative |
A place to exchange thoughts, ideas, and suggestions regarding the THINK ZEBRA! Fundraising Initiative at IDF |
1 | 14 | Join | |
| United Healthcare Suffers |
Other unfortunate PID patients who have insurance coverage with United Healthcare |
11 | 35 | Join | |
| University of Miami (FL) Community (Alumni, Students, etc.) with PIDD |
Are you an Alumni or Student of the University of Miami in Florida with a Primmary Immune Deficiency? If so...Join! |
3 | Join | ||
| Virginia Beach-Tide-Water Area -Parents and Relatives of Children with PID |
A place where local parents and relatives can discuss issues and treatments, struggles and break throughs, tears and laughter! |
2 | Request membership | ||
| Virginia Support Network for PIDD |
A support network for those with PIDD in the state of VA. |
4 | 14 | Join | |
| Washington State PIDD |
Washington residents suffering from CVID; IVIG; SCIG |
4 | 19 | Join | |
| West Virginia PIDDs |
Anybody with an immuno dysfunction anywhere in WV. Everybody else is welcome too but we'd like to have a lot of West Virginians. |
4 | 6 | Join | |
| Wisconsin PIDD Group |
A group for patients who live in Wisconsin. |
1 | 11 | Request membership | |
| Wiskott-Aldrich Syndrome (WAS) |
A discussion forum and support network for patients, family members and friends dealing with WAS. |
19 | 22 | Join | |
| Working with Common Variable Immunodeficiency |
I want to know what kind of jobs people can do with CVID. I've worked in the public until I was diagnosed. |
7 | 36 | Join | |
| X-Linked Agammaglobulinemia |
For caregivers and patients with XLA |
7 | 39 | Request membership | |
| Young Adults PIDD Group |
A place for young adults, in their 20s and 30s, to share and learn from one another about their experiences with PIDD. |
13 | 68 | Request membership |
