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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 some 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 some great organizations that are helpful resources for those in the rare disease community!
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.
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.
“Rise & Rally: Chronic, Complex And Rare Disease Advocacy And Healthcare Reform” is a 501(c)(3) non-profit, non-partisan organization on a mission to fix the broken systems and break down the barriers that impede the care of individuals with chronic, complex, or rare conditions and those trying to help them.
Through targeted initiatives such as patient advocacy, community engagement, the “All Voices” podcast, the Rise & Rally YouTube Channel, their curated collection of free resources, the Road To Reform Program, as well as through collaboration and strategic partnerships, Rise & Rally empowers patients, caregivers, medical educators, healthcare providers, and policymakers with the tools and resources needed to drive the systemic change essential for these communities.
Some of the things you can do through Rise & Rally are listed & linked below.
The Chronic Collective is an awareness-based clothing brand on a mission to support those with chronic conditions through our clothing, community, and actions as a company.
3020 Bernal Ave Ste 110 PMB 3019 Pleasanton, CA 94566-6609
Sign up for our newsletter and get our free 200+ Chronic Condition Resource Guide, special deals, notified of new designs and ways you can get involved in our community!
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Sign up for our newsletter and get our free 200+ Chronic Condition Resource Guide, special deals, notified of new designs and ways you can get involved in our community!
(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.
3020 Bernal Ave Ste 110 PMB 3019 Pleasanton, CA 94566-6609
EMAIL: info@thechroniccollective.com
© THE CHRONIC COLLECTIVE 2023
© THE CHRONIC COLLECTIVE 2023
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.
3020 Bernal Ave Ste 110 PMB 3019 Pleasanton, CA 94566-6609
EMAIL: info@thechroniccollective.com
Sign up for our newsletter and get 10% off your first purchase, special deals, notified of new designs and ways you can get involved in our community!
(No one has enough spoons for spam so don’t worry we will never send you any!)
As promised, here is your 200+ Chronic Condition Resource Guide! All you have to do is click the button below and it will automatically download :)
As promised, here is your 200+ Chronic Condition Resource Guide! All you have to do is click the button below and it will automatically download :)
Sign up for immediate access to our resource guide with 200+ links to a variety of resources AND also access to our newsletter where you will get exclusive sales, discounts, and the the latest on The Chronic Collective’s clothing and community!
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