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Raynauds Association Inc

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Nonprofit Overview

Causes: Health, Voluntary Health Associations & Medical Disciplines

Mission: The Raynaud''s Association was founded to help Raynaud''s sufferers cope with day-to-day activities for maintaining or improving their quality of life.

The organization is committed to:

(1) Member Support Services - offering sharing, support, and education to fellow Raynaud''s sufferers.

(2) Increasing Public Awareness of Raynaud''s - so more sufferers recognize the symptoms and seek treatment.

(3) Helping the Medical Community Research Treatments and Potential Cures for Raynaud''s - through patient recruitment and, eventually, funding for research.

Results: Awareness Campaign results: Through 2016, our public service campaigns achieved over 620 million impressions and generated over $13 million in donated media support. This past year’s press announcement regarding Raynaud’s Awareness Month was picked up by 177 sites with a potential audience of 88 million.

Target demographics: Raynaud’s sufferers, their families, friends and associates.

Direct beneficiaries per year: In 2016, the website had more 315,000 unique visitors. We’re engaged with over 14,000 Facebook fans, 2,000 Twitter followers, and reach over 9,000 people on Pinterest a month across our social media platforms. We host an active Discussion Forum with nearly 11,000 participants. Through 2016, our public service campaigns achieved over 620 million impressions and generated over $13 million in donated media support. This past year’s press announcement regarding Raynaud’s Awareness Month was picked up by 177 sites with a potential audience of 88 million. Through our hotline and emails we assisted just under 1,000 sufferers and their families with support, and our newsletter reached over 4,000 active subscribers.

Geographic areas served: We're a national organization with members across the globe.

Programs: Services include a toll-free hotline and a website with an active discussion forum, informative blog, newsletter, social media pages and numerous other resources, along with broadscale awareness-building efforts to reach the 90 percent of the 15-30 million people with Raynaud’s who do not realize their pain and discomfort has a medical explanation. Awareness and medical attention are important to prevent permanent blood vessel damage and to rule out more serious autoimmune diseases.

Community Stories

70 Stories from Volunteers, Donors & Supporters

Jolene W.

General Member of the Public

Rating: 5

When I was first diagnosed with Raynaud’s, and looking for information, I found Raynaud’s association ‘s website, where a I discovered lots of information all in one place. This is a great organization that provides information, tips on products to help make suffers lead a more comfortable life, and are always there to answer questions. They are definitely the best source of information.

Previous Stories

General Member of the Public

Rating: 5

When I was diagnosed with Raynaud's, my Doctor provided very little information about the disease, or how to live with it. Upon searching for information online, I found the Raynaud's Association to be the best source for information and support.

Read more

General Member of the Public

Rating: 5

They have really helped me, with advice and practical help

Dawn Elise W.

General Member of the Public

Rating: 5

Great information! Very informative. First valuable resource I've seen in 30 years

General Member of the Public

Rating: 5

I like bing able to read articles focused on this disease. This Facebook page helps me to better understand Raynauds. I have not found any other reliable source of informations like this. It is very helpful to me.

General Member of the Public

Rating: 5

The Raynauds Association reminded me that I was not alone. It made me feel as if I was part of a community and for that I am thankful.

General Member of the Public

Rating: 5

This is a great resource and supportive place for those of us that have Raynauds. I learn about new research being conducted as well as products that might benefit me. I also love the contest giveaways and have been lucky enough to be the winner of 2. This is wonderfully run site/page and very informative.

General Member of the Public

Rating: 5

The Raynauds Association is an excellent tool which I use for education as well as resources. Coming from the Scleroderma community this is much needed, helpful information to pass along to my support group and community.

Client Served

Rating: 5

Great info and really helpful. I learned new information

Tracie J.1

General Member of the Public

Rating: 5

Thank you for your information to spread the word about this illness.

Leslie B.3

General Member of the Public

Rating: 5

Relative information to help those of us suffering with this disease. They advocate for millions of sufferers and provide information for the uninformed.

General Member of the Public

Rating: 4

Thank you raynards, I live in Australia, my parents brought us here it’s warmer than England for my raynards. I feel it really helps me understand some issues we face also keeps me in touch with new products available. Great support network.

Katelyn M.1

General Member of the Public

Rating: 5

I've had raynauds all my life ...but only learned what it was within the last 10 years. The raynauds association has helped me significantly in dealing with it, providing info on warming products and possible medications, and most importantly making me feel less alone. Raynauds can make you feel extremely isolated because no one wants the "girl with dead fingers" to touch them. Along with all this they have also helped me with explaining it to people who dont experience the disease themselves.
I am very appreciative of everything they have provided over the years I have been following this amazing group and hope it can continue providing assistance to others like me who have struggled with this.

Sarah R.4

Client Served

Rating: 5

Always there for me when i need help great advice and help and support and i thank you so much

Gail M.1

General Member of the Public

Rating: 3

I have dealt with Raynauds for over 40 years mostly on my own. Most people don't understand that it's not just a matter of cold hands or the impact that it has on day to day life I appreciate the information that is on this site as well as learning from the experiences of others.

General Member of the Public

Rating: 5

I appreciate all the helpful information this organization shares.

Nicola D.

General Member of the Public

Rating: 5

This site is amazing, I've now meet great other people thay are in the same boat as myself and that there are people out there that can help.

Hilary E.1

General Member of the Public

Rating: 5

This page is a great way for me to get valuable and up-to-date information about a condition that is not widely spoken about. It's also nice to connect with others with the same struggles.

Lisa Funari C.

Client Served

Rating: 5

So helpful for recommendations of survival tips, product reviews and discounts. Humorous posts to get you through challenging days. This is the only site that speaks to Raynauds.

Emmylou Medina T.

General Member of the Public

Rating: 5

I found this site long after I was diagnosed with Raynauds, but found the information on products to help me cope with this disease very informative and helpful. The product reviews are exactly what I was looking for. Also, I find the information quite helpful.

General Member of the Public

Rating: 5

For me the raynaud's association has been a great source for information from other members as well as articles from magazines and health care professionals. When I was originally diagnosed i had no idea there were so many others having to deal with the pain, discomfort and embarrassing moments those of us with Raynaud's have to deal with. through the raynaud's association i have been able to better manage the disease as well

Pam J.1

General Member of the Public

Rating: 5

I've had Raynaud's for years and was pleased to find this group. It's a wealth of information about the disease and a great assistance in coping with its symptoms

Julie O.1

General Member of the Public

Rating: 5

Gives very helpful information products that make living with Raynaud's. Shows that you are not alone and that there are others that understand what you are going through.

General Member of the Public

Rating: 5

After years of issues, I was finally diagnosed in my late 30s after a very severe incident that sent me to Urgent Care. Because my doctor was unable to provide much information, I went to the internet for my own research. This group has been essential not only for providing helpful information, but also for support from others who suffer from Raynauds.

Jennifer W.1

General Member of the Public

Rating: 5

This organization keeps me informed of ways to manage my Raynauds. From reviewing & testing warming products to keep us up to date on the latest medical developments I really appreciate it.

General Member of the Public

Rating: 5

Love them for keeping us updated on products, and sharing stories of other people who live with Reynauds.

General Member of the Public

Rating: 5

I have primary raynauds, newly diagnosed. I had never heard of this condition until I was diagnosed and immediately started researching, I came upon the Raynauds Association website where I was provided with a wealth of information and tips on how to deal with this disease. I am glad to be able to read about the stories, experiences, symptoms etc. that other people share through the Raynauds Association Facebook page.

General Member of the Public

Rating: 4

Has been a very informative group. Prior to them - there was no one that talked about it and way's to help. Thankful they are out there with tips and information needed!

General Member of the Public

Rating: 5

The Raunauds Association provides a lot of essential tips and resources to help me manage my day to day symptoms. I'm able to manage much better thanks to this association.

Client Served

Rating: 5

I stumbled upon The Raynaud's Association when I was diagnosed with Raynaud's. They have come to be a great source of information for me and my family. I am very appreciative of the work they do.

General Member of the Public

Rating: 5

I appreciate all the helpful information this organization shares.

1 Barbie D.

General Member of the Public

Rating: 2

After years of feeling alone. I am not.

Thank you,
Barbara R Dean

Client Served

Rating: 5

This is a disease that is all most silent, when it is cold my hands, fingers and toes turn blue, white and sometimes black. It is not easy at all my fingers n toes just ache on a daily basis and also my joints. I am so happy there is this site to help us and others understand what this is and how they can help someone. And the vendors too are great giving ideas for warmth and special deals on pricing..best site ever..

Mysti W.

General Member of the Public

Rating: 5

I was diagnosed with Raynauds in 2013. This website is very much appreciated. My doctor couldn't really give me any tips on daily living, so your blog is invaluable.

Client Served

Rating: 5

I first experienced Raynaud's about 12 years ago and had no idea what it was. I went to my doctor, he didn't know what it was... I lived that way just "dealing with it" until I conducted some research, took that info to another doctor, and was officially diagnosed with Raynaud's. I was the only person I knew with this condition. Since that time, I have discovered the Raynaud's Association and am a huge fan of their site. They continue to keep me and several others up to date with the newest research, potential methods to help reduce the frequency of a Raynaud's flare up, as well as new gadgets that can help! It is definitely my "go to" for the latest and greatest for trust worthy information. It also helps to be able to hear the stories from others that experience this and to know that I'm not alone. I highly recommend this site!!!

Susanne F.

Client Served

Rating: 5

I was diagnosed at age 52, 10 months ago. I had no idea there was a name for what I'd been experiencing. I was given minimal information from my doctor other than "keep warm". In searching the Internet, I found the Raynaud's Association. THERE I found useful information and was connected with a network of support. I've learned so much and am so grateful to have this resource. The things I experience can be scary at times, and thru this organization, I don't feel alone since I don't know anyone personally who has this condition.

General Member of the Public

Rating: 5

Helps me not feel like I am not alone,gives me a way to stay connected to new products and the newest medical findings. Or new medical ways to treat Raynaud's.

Client Served

Rating: 5

When i was finally able to capture an episode òn my cell to show my doc, he said "just as i thought,but there's nothing we can do about it...but these ppl may be able to help" and gave me the raynauds website. Finally a whole group of ppl who know exactly what I'm going thru and even tips and products that really help. I can't tell you how much it means to not feel all alone. FROSTIES ARE COOL!

Katie160

Client Served

Rating: 5

Great resource! Incredible experience and caring people.

1

Client Served

Rating: 5

The Raynaud's Association has given me a platform to speak about my journey with Raynaud's Phenomenon. I felt alone, but once I found this association I met thousands of other sufferers. I have found some really great products to help ease the pain.

Michele129

General Member of the Public

Rating: 5

I'm very thankful for this site..it has given me lots of information and hope as I am not alone. Thanks for being there for me when I have questions, they are usually answered in some of your available posts.

2 Rosemary14

General Member of the Public

Rating: 5

I've learned so much about this disease here and I'm grateful for the work they do!

1

General Member of the Public

Rating: 4

Because of the Raynaud's Association I have become aware of several items that can help me cope with my symptoms. I also feel like a part of community that understands what I experience. Kuddos the Raynaud's Association!

1

General Member of the Public

Rating: 5

Incredibly helpful and useful resource for an underfunded cause. So many sufferers and even more who remain undiagnosed. Thanks.

1 Geri K.

General Member of the Public

Rating: 5

Has a great facebook site with lots of information for Raynauds sufferers. Thank You Raynauds Association Inc!

1

General Member of the Public

Rating: 5

This organization had helped me with ways to explain what Raynaud's is and how it affects me and my family. It is a great website to go for products that have been tested by Raynaud's suffers, instead of having to Google products and be overwhelmed by so many search results. It is great to be able to share stories ,advice, and help others.

1 Bebe H.

General Member of the Public

Rating: 5

I have it in my toes.....I look it up on the web and found this organization. I found out a lot of information and had questions.with them I was able to put my questions out their and found out I was not alone. Others was having the problems I was.It also offer help for u there. I purchase the toes Warmers that I found on that site.

1

General Member of the Public

Rating: 5

As a fairly new Reynaud's sufferer it's great to see this organisation spreading the word and providing support.

1 Sandra97

General Member of the Public

Rating: 5

I have Raynauds and it is a great help to have this resource

1

Volunteer

Rating: 5

I have been a member for over 10 years. I am also a forum moderator. I enjoy meeting others who have Raynaud's and answering their questions. We share our experiences with Raynaud's.It helps to have someone listen to our stories and makes us feel that we are not alone.

Previous Stories
2

Volunteer

Rating: 5

I have been a member of the Raynaud's Association since 2005. I became a moderator on the discussion forum shortly after joining. It is so rewarding to interact with others and support fellow frosties who are seeking a diagnosis and treatment. Many people with Raynaud's are seeking help and information about Raynaud's. This website provides products, information and support to sufferers.

1

General Member of the Public

Rating: 5

It is so wonderful to have a resource for my condition. They provide me with support and resources that I can't get elsewhere.

Client Served

Rating: 5

This association has been so helpful for me - so supportive as I navigate this frustrating and under researched phenomenon. The information provided is always helpful.

Melissa280

General Member of the Public

Rating: 5

I appreciate the information and efforts to improve awareness.

Eileen38

Client Served

Rating: 5

Nice to know I am not the only one with this affliction. I especially like the advertisements for these great products which help us, often at a discounted price! ⛄

General Member of the Public

Rating: 5

This nonprofit made me realize I wasn't alone, and refered me to some great, infrared gloves that have changed my life!!

Greg64

Client Served

Rating: 5

It has given me products for my health condition I couldn't find else where.. It has connected me with others to share data to help others..

Client Served

Rating: 5

The Raynaud's Association was created by folks with Raynaud's for folks with Raynaud's to help spread awareness and create a place where sufferers can share things that work for them. It has enabled me to quickly access research and products that can help my severe Raynaud's syndrome.

Chris192

Client Served

Rating: 5

Raynaud's phenomenon is a pain-in-the-extremities, as well as in the you know where, a condition which causes me significant pain and makes me arsey when it does. I have always found the access to no-nonsense advice and guidance which is available from the association to be a sanity-saver.

General Member of the Public

Rating: 5

Raynauds Association really help me feel like I'm not alone with this condition, through their social media sites they help me connect with other sufferers around the world to share coping strategies which is really helpful.

General Member of the Public

Rating: 5

I have learned so much useful information from this site. I have been able to explain what Raynaud's is to people , they make it easy for the normal average person to understand. The products they research and rate,also giving web links to those products is great. Less time searching the web.

Client Served

Rating: 4

I'm very glad I discovered the Raynauds Association. Any question I have has usually already been answered by others in the Forum, if it hasn't, answers are always quick and useful. I love the support, the tips and the easy to understand information. I have recommend family members to the site so they can get answers in laymans terms instead of medical terms.

Client Served

Rating: 5

This is a really valuable resource for those of us who suffer from the condition.

I have learned so much about causes and, most importantly, how to prevent attacks from the site.

Reccomendations of effective products are also valuable.

1

Volunteer

Rating: 5

I have" suffered" with severe Raynauds for as long as I can remember...... (Walking to primary school at 5yrs old and hiding my hands when I got there because other children would say, "ERRh, what`s wrong with your fingers?")
At Middle school, out-door PE lessons were extremely painful and difficult but I always thought everyone else had the same thing. They would say their hands were numb etc so I didn`t know what I had for many years. I often went to lessons with my tie covering buttons which I had been unable to fasten after cross country. I would drag one dead foot around school for an hour after PE too walking as if I had had a stroke. When I was at High school, I was diagnosed with Raynauds. I was relieved in a way to know that I was not as pathetic as I thought I had been.......... struggling with outdoor activities. (There was a reason).
I am 45 now and have still not learnt to live with it. I can have an attack indoors - by touching something metal like the hoover. I can also have an attack walking to the car or back. Shopping is a nightmare...... the freezer/fridge isles in shops kill me. I usually struggle to the car and have to sit inside with my hands over the heater vents, often in tears until my hands `come back` and then I can pack my trolley into the car. (Someone will run off with my shopping one day!)
I get vibration-white-finger from the lawn mower too. It is not just a winter thing either. There are different KINDS of cold that can get your small blood vessels contracting. Only someone with Raynauds would understand that statement! You don`t even have to `feel` cold yourself to have completely dead hands and feet.
I have tried everything......Ginger etc, running on the spot to get my circulation going before I go outside, lifestyle changes.......nothing helps. I was prescribed a pill from the doctor once, but the side effects worried me as it would dilate blood vessels in my heart and brain too so I never took it.
When people talk about cold places or skiing holidays they dont understand that I CANNOT "GET USED TO THE COLD" toughen-up !!!!!! It is a reaction to the cold that causes blood vessels to spasm...... not a case of hardening up!
I have tried to play in the snow with my children in the past and actually had such a prolonged attack that my nose and tongue have gone numb too and I have felt close to fainting.
I have been known to have a couple of dead fingers on a beach in Spain due to a change in breeze direction!
This awful winter of 2012-2013 I have SUFFERED!!!! I can only describe the attacks as a numbing of multiple fingers and toes. This is debilitating and embarrassing leading to fingers feeling like they have been stamped on (broken) then wrapped in lead tubed so you have no actual feeling but pain. When you can actually access warmth, you get the navy blue "Grazy-Paveing" effect before the excruciating pain of the dark red pins and needles which last approximately 30 mins.
NOBODY KNOWS WHAT WE GO THROUGH. X
(PS.......I would be a very willing guinea pig for any possible cure - [email protected]) Jo Evans

Client Served

Rating: 5

I was very happy when I found the website. I have learned quite a bit (I didn't know there was Primary and Secondary Raynaud's, for example), I have found a lot of helpful suggestions, like what types of gloves other people have found helpful, what supplements people have used that seemed to help them, etc. My healthcare provider has not been very helpful at all, (when I took one medication he prescribed it had AWFUL side effects for me and I thought I was going to die!) and every winter I seem to struggle more and more with the cold. Since this is not a very well understood problem in the medical community, and the cause is not understood, it is wonderful to be able to bounce ideas around online with others who understand the problems.

General Member of the Public

Rating: 5

Raynaud's Syndrome is, at least for me, a debilitating condition and the general public does not know about the disease or how painful and frustrating it can be. In other words, it is nearly impossible to get sympathy or empathy!

Raynaud's Association was a godsend for me when I found it - I finally had a support group and no longer felt so isolated. The newsletter includes medical research developments, advice from members, suggestions for helpful heating products, etc. There is also a forum where members can support and advise each other, and that is so helpful and comforting in a world where most of the public have never seen the word Raynaud's before, let alone pronounce it.

The Association fills a true need and certainly makes me feel much less isolated. I also appreciate the advice and just the reminder that I am not the only one with problems. I highly recommend joining and/or supporting the group.

Review from Guidestar