Being diagnosed with any kind of chronic condition is absolutely life changing. Being diagnosed with a rare condition unfortunately just makes everything that much more difficult.
It can be really hard to navigate doctors, medication, research, even community when there is so much unknown and so few people with your unique diagnosis.
When you’re rare, it can feel like you’re alone. We know. We’ve been there ourselves and want you to know we are right in it with you. It’s not just us though! There are also some great organizations that were created to support you by providing lots of information and great ways to get involved!
Here are two great organizations that are helpful resources for those in the rare disease community!
Being diagnosed with any kind of chronic condition is absolutely life changing. Being diagnosed with a rare condition unfortunately just makes everything that much more difficult.
It can be really hard to navigate doctors, medication, research, even community when there is so much unknown and so few people with your unique diagnosis.
When you’re rare, it can feel like you’re alone. We know. We’ve been there ourselves and want you to know we are right in it with you. It’s not just us though! There are also some great organizations that were created to support you by providing lots of information and great ways to get involved!
Here are two great organizations that are helpful resources for those in the rare disease community!
NORD is such a great resource for rare disorder patients! It also happens to be our chosen organization to donate to! (if you want to read more about that click here)
The National Organization for Rare Disorders is an American non-profit organization aiming to provide support for individuals with rare disorders by advocating for funding research, education, and networking among service providers.
NORD is such a great resource for rare disorder patients! It also happens to be our chosen organization to donate to! (if you want to read more about that click here)
The National Organization for Rare Disorders is an American non-profit organization aiming to provide support for individuals with rare disorders by advocating for funding research, education, and networking among service providers.
Some of the things you can do through NORD are listed & linked below.
Trying to learn about your disease can be overwhelming. Here NORD has created a rare database that shares info on rare diseases.
Through NORD, you can search and find current clinical trials and studies you can apply to that may be applicable to you.
NORD connects you with your rare disease-specific organization via their database at the bottom of your disease explanation.
Trying to learn about your disease can be overwhelming. Here NORD has created a rare database that shares info on rare diseases.
Through NORD, you can search and find current clinical trials and studies you can apply to that may be applicable to you.
NORD connects you with your rare disease-specific organization via their database at the bottom of your disease explanation.
Trying to learn about your disease can be overwhelming. Here NORD has created a rare database that shares info on rare diseases.
Through NORD, you can search and find current clinical trials and studies you can apply to that may be applicable to you.
Trying to learn about your disease can be overwhelming. Here NORD has created a rare database that shares info on rare diseases.
Through NORD, you can search and find current clinical trials and studies you can apply to that may be applicable to you.
NORD connects you with your rare disease-specific organization via their database at the bottom of your disease explanation.
NORD can help you connect and find financial aid for medical care, meds, and more through their patient assistance program.
The Rare Action Network (RAN) is the nation’s leading advocacy network for rare diseases at the state level. It’s a great way to take action!
Through NORD you can find resources that help patients afford medications and treatments when they cannot.
The Rare Action Network (RAN) is the nation’s leading advocacy network for rare diseases at the state level. It’s a great way to take action!
NORD connects you with your rare disease-specific organization via their database at the bottom of your disease explanation.
The Rare Action Network (RAN) is the nation’s leading advocacy network for rare diseases at the state level. It’s a great way to take action!
NORD can help you connect and find financial aid for medical care, meds, and more through their patient assistance program.
Through NORD you can find resources that help patients afford medications and treatments when they cannot.
NORD can help you connect and find financial aid for medical care, meds, and more through their patient assistance program.
Through NORD you can find resources that help patients afford medications and treatments when they cannot.
“The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.”
“The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.”
Some of the things you can do through the Everylife Foundation are listed & linked below.
You can join RDLA, a program designed to support legislative changes for all rare diseases and rare disease organizations.
Rare Across America is a program in which rare patients are connected with their state representatives to work on policy change.
Rare on the Road is a leadership tour that travels around the U.S. to educate and empower the next generation of advocates.
You can join RDLA, a program designed to support legislative changes for all rare diseases and rare disease organizations.
Rare Across America is a program in which rare patients are connected with their state representatives to work on policy change.
Rare on the Road is a leadership tour that travels around the U.S. to educate and empower the next generation of advocates.
You can join RDLA, a program designed to support legislative changes for all rare diseases and rare disease organizations.
Rare Across America is a program in which rare patients are connected with their state representatives to work on policy change.
YARR is a group of 16-30 year old’s from the rare disease community who work to instill confidence in the next generation.
The Rare Artist Contest is a a way to have rare disease patients showcase their stories through their art on Capitol Hill.
The #RAREis scholarship fund provides 37 $5,000 scholarships to rare disease patients to put towards their educational pursuits.
YARR is a group of 16-30 year old’s from the rare disease community who work to instill confidence in the next generation.
The Rare Artist Contest is a a way to have rare disease patients showcase their stories through their art on Capitol Hill.
The #RAREis scholarship fund provides 37 $5,000 scholarships to rare disease patients to put towards their educational pursuits.
YARR is a group of 16-30 year old’s from the rare disease community who work to instill confidence in the next generation.
Rare on the Road is a leadership tour that travels around the U.S. to educate and empower the next generation of advocates.
The Rare Artist Contest is a a way to have rare disease patients showcase their stories through their art on Capitol Hill.
The #RAREis scholarship fund provides 37 $5,000 scholarships to rare disease patients to put towards their educational pursuits.
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(No one has enough spoons for spam so don’t worry we will never send you any!)
The Chronic Collective is an awareness-based sustainable, ethical and non-toxic clothing brand on a mission to support those with chronic conditions through our clothing, community, and actions as a company.
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