Here is a list of Common Variable Immunodeficiency (CVID) resources for CVID patients and loved ones. In addition, I will continue to add to the following list of CVID resources as I hear about them. Of course, Please feel free to email me at susanalynne@cvidiva.com if you would like to suggest a resource to be included!
CVID Resources – Primary Immunodeficiency Awareness Handouts
Below are two of the most commonly seen handouts to build CVID awareness among the general public and doctors. Feel free to print if you would like to give to your doctors.
The Best Websites for CVID Resources
Below you will find links to the best websites for CVID resources I encountered after my diagnosis. Obviously, I aim to provide websites that are factually backed by long-term medical and scientific research. In addition, I will continue to revisit these websites for update information on CVID.
- Immune Deficiency Foundation–https://primaryimmune.org/
- Genetics Home Reference–Common Variable Immune Deficiency
- Jeffrey Modell Foundation–http://info4pi.org/hq
- CSL Plasma–https://www.cslplasma.com/
- National Organization for Rare Disorders–https://rarediseases.org/organizations/advocacy-awareness-immune-disorders-association/
- IG Living-https://www.igliving.com/
- Donating Plasma-https://www.donatingplasma.org/
- MyIgSource-https://www.myigsource.com/
The Best Blogs for CVID Resources
After my diagnosis, I scoured the internet for first-hand patient accounts. Unfortunately, I did not find many. That is partially why I decided to start my own blog. Once again, I aim to list resources that are currently active and credible so please email me if you know of any more!
- IG Living Blog–http://www.igliving.com/BlogEngine/
- The Mighty-https://themighty.com/
Best CVID Resources for Online Support
Below are the best CVID resources for online support that I found after my diagnosis. At the time, I was looking for immediate support especially from other patients.
- IDF Friends-You do need to create an account to join this group: https://idffriends.org/register/
- Daily Strength has online support groups for a variety of different health issues, but I’m including the link to the CVID support page: https://www.dailystrength.org/group/common-variable-immunodeficiency
The Best Facebook Support Groups
Facebook Support Groups can be a source of tremendous support. Most of the groups listed are private groups. You will need to ask to join, but are quickly approved. I included the groups that I know to be most active. You can just read the posts or you can post questions. Other patients are kind enough to offer their opinions readily.
- CVID Zebra Support Group-https://www.facebook.com/groups/CVIDZebraSupportGroup/
- CVID (Common Variable Immunodeficiency)-https://www.facebook.com/groups/127399757357272/
- Common Variable Immune Deficiency Support Group-https://www.facebook.com/groups/612160978843807/
- CVID: An Official IDF Facebook Group-https://www.facebook.com/groups/IDFOfficialCVID/
Credible CVID Resources
Obviously, I am not a doctor. I am just a patient living with CVID. Sometimes I am even successful! (I count the small wins a lot!) This list is not a comprehensive list. So, if you find a resource you find credible and helpful, please email me. Also, don’t forget to subscribe below so you don’t miss any posts!
In the meantime, Stay Strong my Zebra Friends!
ABOUT THE AUTHOR
Though DIVA as she may be, her path to success was not easy and is always evolving. Go here to read about her journey in “Becoming the CVIDiva.” If you want to send Susan Alynne a quick message, then visit her contact page here.