“It’s not what I’ve been through in my life that defines who I am, it’s how I got through it that has made me the person I am today.”
— Burning Nights CRPS
Dealing with a chronic illness takes a toll on you both physically and mentally. Chronic illness can be very debilitating, incredibly isolating, and stressful, but you don’t have to suffer alone. Connecting with others who share similar experiences and conditions can be beneficial. Check out our curated list of support groups and resources for the conditions we currently fund.
Universal Resources
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STUFF THAT WORKS
Stuff That Works is a great way to connect with others suffering with your condition. Those suffering can ask questions, list helpful treatments and connect with others all within a condition specfic group forum.
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FIG APP
The FiG app is a great app for those with chronic illnesses that require specific dietary restrictions such as MCAS and Gastroparesis. FIG makes it easy to enter your dietary restrictions and pick out foods that are compatible with your diet.
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SPOONIE SISTER SHOP
Spoonie Sister shop is a great brand that curates unique clothing. You can personalize your items with medical conditions you have. Their clothing is a great way to start a conversation and raise awareness.
Elhers-Danlos Syndrome Resources
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FACEBOOK SUPPORT GROUP
The Ehlers Danlos Syndrome Support Group consists of over 40,000 members. It’s a great way to connect with others who are suffering from EDS in a safe, positive and encouraging environment.
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The Elhers-Danlos Society
The Elhers Danlos Society is a Instagram page that works on spreading positivity and awareness throughout the EDS community. This instagram is the perfect way to make others feel heard and less isolated.
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FACEBOOK SUPPORT GROUP
The Ehlers Danlos Syndrome Support Group consists of over 40,000 members. It’s a great way to connect with others who are suffering from EDS in a safe, positive and encouraging environment.
Gastroparesis Resources
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FACEBOOK SUPPORT GROUP
This Gastroparesis Support Group consists of over 40,000 members. It’s a great way to connect with others who are suffering from Gastroparesis in a safe, positive and encouraging environment.
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Gastroparesis Patient Association for Cures and Treatments (G-PACT)
G-PACT is an organization for people suffering from Gastroparesis. The website has many different resources including a list of motility specialists in each state.
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FACEBOOK SUPPORT GROUP
This Gastroparesis Support Group consists of over 4,000 members. It’s a great way to connect with others who are suffering from Gastroparesis in a safe, positive and encouraging environment.
Postural Orthostatic Tachycardia Syndrome Resources
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Dysautonomia Support Network
Dysautonomia Support Network is a great organization dedicated to helping those suffering from POTS find the best physicians, resources, and treatments. They even have curated Facebook groups for each region of the US.
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FACEBOOK SUPPORT GROUP
This POTS Support Group consists of over 50,000 members. It’s a great way to connect with others who are suffering from POTS in a safe, positive and encouraging environment.
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Dysautonomia International
Dysautonomia International is a Instagram page that works on spreading positivity and awareness throughout the Dysautonomia community. This instagram is the perfect way to make others feel heard and less isolated.
Mast Cell Activation Syndrome Resources
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Mast Cell Action
Mast Cell Action is a great organization dedicated to helping those suffering from MCAS find the best resources. They even have curated Facebook groups for both adults with MCAS and for parents that have children with MCAS.
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FACEBOOK SUPPORT GROUP
This Mast Cell Disease Support Group consists of over 15,000 members. It’s a great way to connect with others who are suffering from Mast Cell Diseases such as MCAS and Mastocytosis in a safe, positive and encouraging environment.
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FACEBOOK SUPPORT GROUP
This MCAS Group consists of over 4,000 members. It’s a great way to connect and learn from others who are suffering from Mast Cell Diseases, such as MCAS, in a safe, positive and encouraging environment.
Vascular Compression Syndrome Resources
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Vascular Compression Awareness
Vascular Compression Awareness is a Instagram page that works on spreading positivity and awareness throughout the MALS, SMAS, NCS, PCS, MTS community. This instagram is the perfect way to make others feel heard and less isolated.
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FACEBOOK SUPPORT GROUP
This Vascular Compression Syndrome Support Group consists of over 200 members. It’s a great way to connect with others who are suffering from compressions in a safe, positive and encouraging environment.
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FACEBOOK SUPPORT GROUP
This Vascular Compression Syndrome Support Group consists of over 200 members. It’s a great way to connect with others who are suffering from compressions in a safe, positive and encouraging environment.
Complex Regional Pain Syndrome Resources
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BURNING NIGHTS CRPS
Burning Nights CRPS is a Instagram page that works on spreading positivity and awareness throughout the CRPS/RSD community. The daily content is the perfect way to shed a positive light on the chronic pain community.
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RSDSA
RSDSA is a Instagram page that works on spreading positivity and awareness throughout the CRPS/RSD community. The daily CRPS stories from fellow patients is the perfect way to make others feel heard and less isolated.
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FACEBOOK SUPPORT GROUP
The RSD/CRPS and Neuropathic pain syndrome Facebook Group consists of 13,000 members. It’s a great way to connect with others who are suffering from CRPS in a safe, positive and encouraging environment.