Primary Immunodeficiency
What is Primary Immunodeficiency?
Primary Immunodeficiency is an inherited disorder characterized by a non-existent immune system or an immune system that does not work correctly.
Last updated 26 Jun 2021, 05:57 PM
26 Jun 2021, 05:55 PM
I'm attending the virtual 2021 Living Rare, Living Stronger NORD Patient and Family Forum today and tomorrow!
It is amazing! wonderful presenters and ways to network with patient peers and medical experts:
https://rarediseases.org/
Last updated 14 Jun 2021, 01:21 AM
14 Jun 2021, 01:21 AM
Hi,
I have a Primary Immune Deficiency and found the Immune Deficiency Foundation to be super helpful with support and educational material and programs.
In Canada, CIPO, The Canadian Immunodeficiencies Patient Organization is also providing resources, peer support, and helpful information.
Last updated 29 May 2009, 09:54 AM
29 May 2009, 09:54 AM
Oh I see. Thank you for your reply. Symptoms from the last week: I've had a post nasal drip, sore throat and a deep irritating cough with extreme fatigue. I'm just over the worst of the flu - (it's winter here now). My medical cover is almost exhausted - getting treatment here is extremely expensive and I almost always need two different types of anti-biotic courses in order to overcome an infenction / illness - I seem to be falling ill now every two months. Taking off from work because of being extremely ill, is now almost impossible for me to do - I have to go to work every day, no matter how sick or exhausted I am feeling. I'm being treated by a doctor with a three monthly Polygam Infusion of 24 grams. I've had this treatment for over a year now but I can't see or feel any difference really because I'm healthy for a while and then sick soon after again. As a patient I would like to have more information about this disease and different types of treatment options availbale - It would be very nice if the effects of the illness could be made known to the bublic or at least colleagues, friends and family.
29 May 2009, 08:50 AM
Ah, I see your point :-) Here is the kind of data that I know would be useful for some clinicians I work with in the UK: 1 - symptoms from the last week (cough, breathlessness, sputum, nasal discharge, diarrhoea) 2 - effects on life: visits to physician, antibiotic therapy, days off work / school 3 - for home therapy, batch numbers medications and site and number of attempts for needle. So my question is, what other kinds of data would your clinicians find useful, or would you like to collect as a patient? Thank you!
28 May 2009, 10:01 AM
I have an Immunoglobulin Deficiency - all 13 Isotype levels are way below normal. What information are you looking for exactly?
| Title | Description | Date | Link |
|---|---|---|---|
| CIPO: Canadian Immunodeficiencies Patient Organization |
The Canadian Immunodeficiencies Patient Organization provides Education, Support, and Advocacy for Patients, Families, and the Medical communities. http://www.cipo.ca/
|
07/07/2021 | |
| IDF: The Immune Deficiency Foundation |
The Immune Deficiency Foundation is an American organization providing resources, support, networking and education for Patients, Families, and the Medical community. https://primaryimmune.org/
|
07/07/2021 | |
| NORD: National Organization for Rare Disorders |
The National Organization for Rare Disorders is an American organization providing information, support and networking for Patients, Families, and the Medical community. https://rarediseases.org/about/
|
07/07/2021 | |
| Primary Immunodeficiency Association (PiA) |
PiA exists to support people living with Primary Immunodeficiencies. We liaise with clinicians and immunologists, fund relevant research and campaign for the rights of our members in the UK. |
03/20/2017 | |
| Rare Disease Foundation |
The Rare Disease Foundation, a Canadian organization, provides information and support services for Patients, Families, and the Medical communities. https://rarediseasefoundation.org/
|
07/07/2021 |
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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PearlyEverlasting
I reside in Toronto, Canada, and live with two rare conditions: MALS (Median Arcuate Ligament Syndrome) and PID (Primary Immune Deficiency).
It took decades of being a super-sleuth to be properly diagnosed with these conditions! My hope is to provide whatever experiences I have gained along the way to assist you with your research for the right people and right answers.
Thankfully, these days there are so many excellent organizations to contact for education, support, and networking, and RareShare is providing a host for us all to network and build a strong and vibrant presence as an important patient and provider population.
Please feel welcome to view the many items here! They are meant for all: patients, family and supporters, caregivers, medical professionals, research proferssionals, and healthcare advocates.
And yes, I can still play the Oboe!
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I reside in Toronto, Canada, and live with two rare conditions: MALS (Median Arcuate Ligament Syndrome) and PID (Primary Immune Deficiency).
It took decades of being a super-sleuth to be properly...
I'm almost always sick and I've become severely depressed about this...
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2021 Living Rare, Living Stronger NORD Patient and Family Forum June 26-27!
Created by PearlyEverlasting | Last updated 26 Jun 2021, 05:57 PM
Organizations for PI
Created by PearlyEverlasting | Last updated 14 Jun 2021, 01:21 AM
What data do you need to give to your clinicians?
Created by idiopathic | Last updated 29 May 2009, 09:54 AM
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