Groups
Group |
Description | Manager | Topics | Members | Join Link |
|---|---|---|---|---|---|
| British Columbia IVIG recipients with immune system disorders |
British Columbian's who are suffering with hypogammaglobulinemia |
10 | 12 | Join | |
| 2013 National Conference tips and suggestions |
a forum to share tips and suggestions for the IDF national conference in Baltimore |
7 | 19 | Join | |
| aa-SubQ---Where in your home do you set up for infusion? |
Curious about locations other than the kitchen |
5 | 49 | Join | |
| Accredo Patients |
Patients who have Accredo for their gamma and supplies |
19 | 136 | Join | |
| Adult Patients with PIDD |
This group will be comprised of patients who are adults who have been diagnosed with PIDD. |
4 | 23 | Join | |
| Alabama IDF Friends Group |
A group for patients and their families to exchange information and support |
24 | 47 | Join | |
| Arizona IDF Friends Group |
This group is for patients and family of patients in Arizona |
18 | 39 | Join | |
| Arkansas IDF Group |
NW Arkansas sufferers from IDF and wanting support and help access insurance coverage for treatment |
1 | 8 | Join | |
| BioScripts patients |
Experience or new abotut BioScripts |
4 | 22 | Join | |
| California |
A place for Californians to gather and share and make friends |
35 | 102 | Join | |
| California Southern |
A Place for SoCal Zebras to graze |
1 | 10 | Join | |
| CALIFORNIA:Northern area |
A place for us all to share info |
11 | Join | ||
| Caremark customers |
People who get their medication through Caremark |
16 | 47 | Join | |
| Central Florida Group |
for patients and thier families who live in central florida |
16 | 35 | Join | |
| Central Florida Support Group |
Support group for Individuals with PIDD |
1 | 1 | Request membership | |
| Central Texas Adults with Primary Immunodeficiency |
Open for discussion of illness and treatment issues, education, and encouragement |
1 | Join | ||
| Chronic Granulomatous Disease (CGD) |
a place for people to talk about CGD |
13 | 23 | Join | |
| Chronic Pain Suffers |
A safe but off main forum place to vent and share what it is like to live with Chronic pain |
37 | 101 | Request membership | |
| CIDD Patients |
For patients and families with Combined Immune Deficiency Disease |
7 | 46 | Join | |
| Cleveland Area |
Cleveland area patients and families |
6 | 40 | Join | |
| Colorado PIDD Group |
A group for CO-based PIDD patients |
2 | 10 | Request membership | |
| Combined Immunodeficiency |
A group for PIDD patients (or caregivers) with a combination of low B and T cells. |
17 | 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 |
4 | 17 | Join | |
| Current Research on PIDDs |
A forum to post and discuss current research findings on PIDDs |
15 | 45 | Request membership | |
| cvid in indiana |
cvid |
5 | 14 | Join | |
| DE PIDD Group |
For PIDD patients and their families who live in, work in, or know where the First State is! |
3 | 18 | Join | |
| Florida state |
Trying to get all friends, family, patients, and volunteers in Florida. |
9 | 28 | Join | |
| Gammagard 10% Approved for SubQ |
For patients and/or families using Gammagard 10% |
8 | 28 | Join | |
| Gamunex Direct customers |
Gamunex Direct also known as Centric Health Resources - a specialty pharmacy? |
2 | 12 | Join | |
| Georgia PIDD |
Support for PIDD in the state of Georgia |
21 | 38 | Join | |
| Granulomatous Variant of Common Immunodeficiency |
To share information on those who suffer with Granulomatous Variant of CVID |
1 | 4 | Join | |
| Hawaii PIDD |
For those of us who are isolated on an island |
1 | 1 | Request membership | |
| Headaches from IGG |
To find the numbers of people who have headaches with IGG; to find out treatments that work and don't work for headache; and .... |
2 | 41 | Join | |
| Hizentra |
Patients and family members to share experiences with Hizentra |
38 | 184 | Join | |
| Houston Area PIDD |
Houston Area PID Patients or Parents of PID Patients |
4 | 24 | Join | |
| Houston Texas Adult On-set Hypogammaglobulinemia/ Common Variable |
I have been hoping a Houston area group would form for friendship and support. |
1 | 15 | Join | |
| Hyper IgE or Jobs Disease |
Families w/ one or more diagnosed w/ Hyper IgE Syndrome / Jobs Syndrome |
7 | 26 | Join | |
| IDF Kentuckiana PIDD Support |
A place for Kentuckianas PIDDers to come and meet and share experiences |
18 | 24 | Request membership | |
| Illinios PIDD group |
A network for PIDD patients/caregivers from Illinois |
26 | 69 | Join | |
| Iowa IDF support group |
To provide support to patients |
6 | 16 | Join | |
| Ivig |
A place where patients on IVIG can talk about their experience. |
1 | 23 | Join | |
| IVIG Side Effects in Children |
Anyone have children receiving IVIG and do they have any side effects? |
5 | 39 | Join | |
| Kansas/Missouri IDF Support Group |
This group is for Kansas and Missouri PIDD patients and family- all are welcome |
23 | 59 | Join | |
| KY-PIDD group |
for people suffering from PIDD in Ky, lets support each other |
1 | Request membership | ||
| late onset diagnosis CVID |
Twenty years of infections and surgeries before put on IVIG |
23 | 96 | Join | |
| Living with both IBD (Crohn's Disease or Ulcerative Colitis) and CVID (or other PIDD) |
For those who are diagnosed with both a primary immunodeficiency disease and inflammatory bowel disease. |
4 | 20 | Join | |
| Louisiana PIDD |
For PIDD patients and families in Louisiana or Southern Mississippi |
4 | 28 | Join | |
| MA PIDD Patients |
A way to connect those affected with PIDD in MA |
9 | 50 | Join | |
| Maryland Patients |
For patients who live in the "Old Line State" |
4 | 32 | Join | |
| Medicare Issues and PIDDs |
Positive and Negatives of having Medicare |
18 | 62 | Request membership | |
| Michigan IDF Friends Group |
Michigan patient and caregiver group |
17 | 40 | Join | |
| Minnesota Families with PIDD |
Minnesota families dealing with PIDD |
11 | 45 | Join | |
| Mississippi PIDD |
A web based support and information group for patients and families living or near Mississippi |
1 | 1 | Request membership | |
| Mitochondrial disease, defect, or disorder... AND...a Pidd |
A place for those of us with both of these rare diseases to support each other and learn from each other. |
1 | Closed | ||
| Montana Autoimmune, CVID, hypogammaglobulinemia, and friends and family. |
You are not alone, even in Big Sky Country! |
1 | 4 | Join | |
| Multiple Major Medical Issues or Rare Disorders--Coping Strategies and Experiences |
Dealing with immune deficiency along with 1 or more other disorders--maybe just as rare, and often having just as big an impact? Can we talk? |
2 | 28 | Join | |
| NC IDF Friends Group |
This group is for support for patients, families and friends in North Carolina. |
34 | 33 | Join | |
| NEMO |
Families with NEMO |
5 | Request membership | ||
| Nevada |
This group is for patients and family of patients in Nevada |
1 | Join | ||
| New England PIDD |
For anyone in Maine, Massachusetts, New Hampshire, Rhode Island, Vermont |
5 | 43 | 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 | 7 | Join | |
| New Jersey PID Patients and Friends |
A Group for New Jersey Patients, Families and Friends |
4 | 42 | Join | |
| New Mexico PI Patients and Friends |
No, we're not part of Mexico. Yes, we are part of the United States. |
2 | 5 | 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! |
8 | 45 | 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. |
5 | 19 | Request membership | |
| Non-Denominational PID Support Group |
A group for people who want to seek and receive support around PIDs and maintain awareness of the diversity of religions of participating members |
9 | 17 | Join | |
| North Texas PIDD Connection |
Connecting those in the Greater Dallas/Fort Worth Texas area |
9 | 42 | Join | |
| North West |
Connecting folks in Idaho, Montana, Washington, Oregon, Utah |
3 | 22 | Join | |
| Northeast Wisconsin PIDD |
People living with or parents of children with PIDD in Northeast WI |
1 | 3 | Join | |
| Northern California |
A place for folks in No. California |
4 | Join | ||
| Nurses |
A place for us to gather |
20 | 19 | Closed | |
| Ohio - Columbus area |
OPEN TO ALL COLUMBUS AREA PATIENTS AND FAMILIES |
2 | 27 | Join | |
| Oklahoma PIDD group |
Anyone with a PIDD that lives in Oklahoma |
9 | 21 | Join | |
| Oregon discussion after 1st awesome IDF meeting. |
Lets make a connection and help each other out. |
1 | 10 | Join | |
| PA PIDD Patients and Friends |
A group for PIDD patients, family members, and friends living in the state of Pennsylvania |
10 | 47 | Join | |
| parent group |
this group is for all parents who have a child with a pid |
62 | 203 | Join | |
| Parents and Kids with Immune Deficiency |
A place for families where parents and children share PIDD diagnosis. |
2 | 10 | Join | |
| Parents of Children with CVID, Allergies, probable mito, genetic issues, |
This group is created for parents and the challenges for dealing with their children's needs. |
1 | Request membership | ||
| Parents of Children with CVID, Allergies, probable mito, genetic issues, |
This group is created for parents and the challenges for dealing with their children's needs. |
1 | 1 | Request membership | |
| parents with PIDD |
not parents with PIDD kids |
5 | 34 | Request membership | |
| 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. |
13 | 126 | Join | |
| PIDD & Emotions |
A place to discuss the many issues PIDDs and the emotional aspects |
66 | 140 | Request membership | |
| PIDD with Autoimmune Disease |
Patients or Caregivers who Have an Immune Disorder and the Complications of Autoimmune Disease |
6 | 36 | Join | |
| PIDD/Emotions Part 2 |
A place to discuss issues around PIDD and how id affects us emotionally |
20 | 65 | Request membership | |
| Rhode Island Primary Immune Deficiency Disease Support Group |
Support for Rhode Island and local MA area! |
11 | 17 | Join | |
| RN CVID support circle |
For Registered Nurses to exchange information |
3 | 4 | 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 | ||
| SELECTIVE IGM DEFICIENCY |
PEOPLE WITH SUFFER FROM SELECTIVE IGM, IF ANY |
26 | 16 | Join | |
| Singles |
A place to find new friends, who are alone and facing PIDDs as parents or patients |
1 | 5 | Closed |
