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Groups

Groupsort icon Description Manager Topics Members Join Link
British Columbia IVIG recipients with immune system disorders

British Columbian's who are suffering with hypogammaglobulinemia

10 10 Join
aa-SubQ---Where in your home do you set up for infusion?

Curious about locations other than the kitchen

4 34 Join
Accredo Patients

Patients who have Accredo for their gamma and supplies

20 113 Join
Alabama IDF Friends Group

A group for patients and their families to exchange information and support

21 34 Join
Arizona IDF Friends Group

This group is for patients and family of patients in Arizona

16 30 Join
Arkansas IDF Group

NW Arkansas sufferers from IDF and wanting support and help access insurance coverage for treatment

1 5 Join
BioScripts patients

Experience or new abotut BioScripts

4 18 Join
California

A place for Californians to gather and share and make friends

32 83 Join
Caremark customers

People who get their medication through Caremark

12 38 Join
Central Florida Group

for patients and thier families who live in central florida

11 24 Join
Central Florida Support Group

Support group for Individuals with PIDD

1 1 Request membership
Chronic Granulomatous Disease (CGD)

a place for people to talk about CGD

11 18 Join
Chronic Pain Suffers

A safe but off main forum place to vent and share what it is like to live with Chronic pain

30 83 Request membership
CIDD Patients

For patients and families with Combined Immune Deficiency Disease

8 42 Join
Cleveland Area

Cleveland area patients and families

4 35 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.

7 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 13 Join
Current Research on PIDDs

A forum to post and discuss current research findings on PIDDs

7 23 Request membership
cvid in indiana

cvid

4 6 Join
DE PIDD Group

For PIDD patients and their families who live in, work in, or know where the First State is!

3 15 Join
Florida state

Trying to get all friends, family, patients, and volunteers in Florida.

7 19 Join
Gammagard 10% Approved for SubQ

For patients and/or families using Gammagard 10%

8 18 Join
Gamunex Direct customers

Gamunex Direct also known as Centric Health Resources - a specialty pharmacy?

1 10 Join
Georgia PIDD

Support for PIDD in the state of Georgia

19 30 Join
Granulomatous Variant of Common Immunodeficiency

To share information on those who suffer with Granulomatous Variant of CVID

1 5 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 24 Join
Hizentra

Patients and family members to share experiences with Hizentra

31 138 Join
Houston Area PIDD

Houston Area PID Patients or Parents of PID Patients

4 15 Join
Houston Texas Adult On-set Hypogammaglobulinemia/ Common Variable

I have been hoping a Houston area group would form for friendship and support.

1 7 Join
Hyper IgE or Jobs Disease

Families w/ one or more diagnosed w/ Hyper IgE Syndrome / Jobs Syndrome

5 24 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

21 64 Join
Iowa IDF support group

To provide support to patients

7 14 Join
IVIG Side Effects in Children

Anyone have children receiving IVIG and do they have any side effects?

5 34 Join
Kansas/Missouri IDF Support Group

This group is for Kansas and Missouri PIDD patients and family- all are welcome

22 50 Join
late onset diagnosis CVID

Twenty years of infections and surgeries before put on IVIG

19 69 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.

3 8 Join
Louisiana PIDD

For PIDD patients and families in Louisiana or Southern Mississippi

5 18 Join
MA PIDD Patients

A way to connect those affected with PIDD in MA

6 39 Join
Maryland Patients

For patients who live in the "Old Line State"

4 26 Join
Medicare Issues and PIDDs

Positive and Negatives of having Medicare

16 55 Request membership
Michigan IDF Friends Group

Michigan patient and caregiver group

12 31 Join
Minnesota Families with PIDD

Minnesota families dealing with PIDD

6 35 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!

3 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 11 Join
NC IDF Friends Group

This group is for support for patients, families and friends in North Carolina.

17 24 Join
NEMO

Families with NEMO

1 Request membership
New England PIDD

For anyone in Maine, Massachusetts, New Hampshire, Rhode Island, Vermont

3 36 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 5 Join
New Jersey PID Patients and Friends

A Group for New Jersey Patients, Families and Friends

4 33 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!

8 36 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.

3 17 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 13 Join
North Texas PIDD Connection

Connecting those in the Greater Dallas/Fort Worth Texas area

5 33 Join
North West

Connecting folks in Idaho, Montana, Washington, Oregon, Utah

3 18 Join
Nurses

A place for us to gather

20 19 Closed
Ohio - Columbus area

OPEN TO ALL COLUMBUS AREA PATIENTS AND FAMILIES

2 25 Join
Oklahoma PIDD group

Anyone with a PIDD that lives in Oklahoma

5 16 Join
Oregon discussion after 1st awesome IDF meeting.

Lets make a connection and help each other out.

1 5 Join
PA PIDD Patients and Friends

A group for PIDD patients, family members, and friends living in the state of Pennsylvania

10 39 Join
parent group

this group is for all parents who have a child with a pid

56 172 Join
Parents and Kids with Immune Deficiency

A place for families where parents and children share PIDD diagnosis.

1 2 Join
parents with PIDD

not parents with PIDD kids

5 26 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.

12 102 Join
PIDD & Emotions

A place to discuss the many issues PIDDs and the emotional aspects

63 130 Request membership
PIDD/Emotions Part 2

A place to discuss issues around PIDD and how id affects us emotionally

19 60 Request membership
Rhode Island Primary Immune Deficiency Disease Support Group

Support for Rhode Island and local MA area!

5 16 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

36 8 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

9 60 Request membership
South Carolina IDF Support Group

For ALL Patients and Caregivers with PIDD's/CVID

1 1 Request membership
South Dakota PIDD - IDF Support Group

A group for patients and families living in SD to gather, share, and make friends.

2 3 Join
South Florida Group

Patients and families living in South Florida

19 39 Join
Southwest Missouri / Northwest Arkansas / Northwest Oklahoma participants

Do you live near SW MO? NW AR? NW OK? Let's talk about our experiences.

1 1 Request membership
Southwest Washington and Portland Metro area PIDD group

Patients, parents and caregivers - PIDD in all forms. Support, friendship and knowledge is shared.

3 10 Join
Specific Antibody Deficiency(SAD)

For people with Specific Antibody Deficiency to share symptoms, treatments, and experiences. There are others out there like us!!!

3 14 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
Sports and PIDD

Athletes, Coaches and Athletic Officials with PIDD

2 16 Join
Spouses of PIDD Patients

This is a group for spouses and significant others of PIDD patients

2 8 Request membership
Teachers with PIDD

Teachers with PIDD and their stories

5 27 Join
Tennessee PIDD Support Group

This group for patients and their families who live in the Volunteer State

23 24 Join
Texas IDF Friends Group

A forum where people can come and discuss, and ask questions about, living with or caring for someone with PID. Moderated by a trained IDF volunteer

1 17 Join
The Bone Marrow Transplant Experience

A group for those who wish to share their experiences traveling the road of BMT.

2 22 Join
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