We have been fortunate to have the support and assistance from the below organisations and communities since the movement began in 2016. Please note that not all organisations or advocates shown here are participating in this year’s event. Always check our approved messages page for current, up-to-date org information and logos.
Alex TLC is a trusted and experienced organisation offering support and information for all those affected by a genetic leukodystrophy. Formerly ALD Life, an internationally recognised centre of excellence for people affected by adrenoleukodystrophy and adrenomyeloneuropathy, the charity was established in 2004.
Due to popular demand, we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity.Alex TLC Support website
Love neuroscience and finding out about more about the human balance system? Love supporting researchers who strive to get treatments out of labs and into clinics? If so, you’ll love this: https://bit.ly/2ORTPRg #MdDSresearchMDDS Dazzle4Rare 2020 Message
“Acute Necrotizing Encephalopathy is a rare type of brain disease that occurs following viral infections. Typically, influenza is the leading trigger, followed by HSV6 and other viruses such as coxsackie and enteroviruses. ANE usually occurs in early childhood, although adolescent and adult cases have been reported. It has the susceptibility to be recurrent in patients who have specific gene variants. ANE was first proposed by Professor Masashi Mizuguchi in 1995 and has slowly gained more recognition worldwide as cases and research are published. ANE International is an initiative that began in 2016 parents of children affected by ANE. Our goal has foremost been to support and inform all families who are diagnosed with ANE no matter the patient’s age or nationality. Second to that is our wish to support research ny way possible and to spread among the general population & medical communities, knowledge of ANE.”ANE International Website
Ataxia and Me
A non-profit organisation founded by a patient, and run by patients, helping to maximise the patient voice within the medical, health and pharma community.Ataxia and Me Website
Cambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, and working together, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain.Cambridge Rare Disease Network website
Supporting patients with Central Pain Syndrome, Intractable Pain & Nervous System DisordersCentral Pain Nerve Center
FibroFlutters is a ‘Patient-Led’ Non-profit Community based Patient organisation that is ran by ‘unpaid’ Patient Volunteers. * We raise awareness, share health communications to educate people about varying chronic illnesses.Fibro Flutters HQ
Gastroparesis: Fighting for Change says on their Facebook page, “ The “Gastroparesis: Fighting for Change” community page is a public information board created in conjunction with our private “Gastroparesis Fighting for Change” advocacy group, which was formed to unite those with gastroparesis and other digestive/motility disorders in an effort to share experiences, ideas, and resources as we spread awareness of these sometimes devastating illnesses, work toward improving conditions in our community, contribute information and tips for advocating for ourselves and the larger digestive disorders/diseases community, and fight for beneficial legislation and policies. Our website is a further public extension of these efforts.”Gastroparesis: Fighting for Change Facebook Page
Glitter Queens Global has been serving the chronically ill communities since 2014. There is now a team of women who share a passion for spreading love, hope, cheer, and encouragement through either pre-made greeting cards or handmade, one-of-a-kind cards with a special surprise inside (a handful of glitter) that showers the recipient with joy when it’s opened. April is passionate about advocacy, awareness surrounding all chronic illness, and outreach through gift baskets and monthly events within the GQG Community page at ttps://www.facebook.com/glitterqueensglobal. Glitter Queens Global has now become a cause.Glitter Queens Global Website
Our Mission is to provide a place where women dx with gyn cancers and their caregivers can find reliable information and support and to provide a place where health care providers can gain insight into the patient experience, discovering what topics/issues are most important to gyn cancer patients.#GYNCSM Blog
The Hashimoto’s Encephalopathy SREAT & Seronegative Autoimmune Encephalitis Alliance (“HESA”) is a 501(c)(3) nonprofit organization formed in 2012 to collect, archive, and share information about Hashimoto’s Encephalitis/Encephalopathy (“HE”), also known as Steroid Responsive Encephalopathy Associated with Thyroiditis (“SREAT”) with the public and medical professionals. HE is one of the sero-negative forms of Autoimmune Encephalitis/Encephalopathy (“AE”), meaning that the specific autoantibody that wreaks havoc on the brains of these AE patients has not yet been identified in the laboratory.Hashimoto’s Encephalopathy SREAT
The International Pain Foundation’s mission is to educate and support Chronic Pain Patients on a National and local level including Lupus, Lyme, Ataxia, Reflex Sympathetic Dystrophy (RSD), Diabetic Neuropathy and Post Cancer Pain and 150 other nerve pain conditions.International Pain
We fulfill our mission by:
– Promoting public and professional awareness of chronic pain conditions
– Educate those afflicted with the diseases/conditions/syndromes, their families, friends and healthcare providers on the disabling pain it causes.
– Action-oriented public awareness, education, and pain policy improvement through activities and efforts to eliminate the under treatment of chronic pain.
The IWSA is dedicated to individuals & families with WAGR syndrome. It’s our desire to celebrate the joy, love and courage of the 450 known WAGR patients worldwide.iWAGR Association
Metabolic Support UK (formerly known as Climb) are the leading patient organisation for Inherited Metabolic Disorders supporting thousands of patients worldwide.Metabolic Support UK
One Rare Experience is a free program for young adults with rare conditions working towards fulfilling One Rare’s mission to improve experiences for this community through education, mentoring and peer support. Our inaugural event was scheduled for August 2020.One Rare
You probably know that Pitt-Hopkins syndrome is a very rare syndrome. It can, in fact, be classed as an ultra-rare ultra-orphan disease. This is because Pitt-Hopkins Syndrome only occurs at a rate of about 1 in 225,000 to 300,000. That’s something like 4 cases in a million people!Pitt Hopkins UK
There are many children born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community.Poland Syndrome UK
The PTEN Foundation was founded to find treatments or therapies for PTEN Syndromes. Until then, we will work to teach the world about PTEN; caring for our patients along the way. #dazzle4rarePTEN Foundation
The Putting Rare Diseases Patients First!® organization is a 501 (c) (3) non-profit, and a registered charity. It has tax exempt status with the US tax authorities (IRS), and in California. Donations will be tax deductible.Putting Rare Disease Patients First website
Medics4RareDiseases Ltd is a registered UK charity, Registered Charity Number 1183996. M4RD is registered at Companies House as a private company registered by guarantee without share capital, Company Number 11119884. Our registered address is: c/o Analogue Wonderland, Unit 32 BasePoint – Cressex Enterprise Centre, Lincoln Road, High Wycombe, HP12 3RL.Medics 4 Rare Disease Website
Metabolic Support UK (formerly known as Climb) are the leading patient organisation for Inherited Metabolic Disorders supporting thousands of patients worldwide.Metabolic Support UK Website
Working to connect all members of the Rare Disease community. Together we are stronger!Rare Disease Connection Facebook Page
Rare Disease Ghana Initiative was started in 2017 by Mr. Samuel Agyei Wiafe – a Clinical Psychologist who saw the need to advocate for people living with rare diseases in Ghana after he came across a family affected by an undiagnosed syndrome. After realising the impact of undiagnosed and rare diseases on the family and the challenges within the healthcare system, he has established Rare Disease Ghana Initiative to champion advocacy and support for families affected.Rare Disease Ghana Initiative Website
Rare Revolution: To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. It’s time to turn the tide!Rare Revolution Magazine Website
for young people, by
The RARE Youth Revolution is a dedicated news platform for young people to access relevant content centred around rare diseases.Rare Youth Revolution Website
Approximately 400 million people worldwide live with a rare disease, almost 50% of these are children and young people, and many more may be a young carer, supporting a loved one.
This platform is powering up young RARE voices to be heard and empowering a future generation of rare disease advocates.
RareShare is built on a premise that sharing information is good, especially when it comes to information about rare diseases. The more you share the more you have an opportunity to help others whose lives have been touched by rare disease. By joining our community of support and sharing information about your experience, you will help others, including researchers, better understand your disease. Please keep in mind that the content and extent to which you share is ultimately your choice and responsibility.RareShare Website
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) mission is to provide support, education, and hope to all affected by the pain and disability of CRPS/RSD, while we drive research to develop better treatments and a cure.RSDSA Website
Promoting research, education, and continuous support to end undiagnosed and misdiagnosed Ring20 epilepsy.Ring20 Website
A group of students determined to raise rare disease awareness. Launch date: World Rare Disease Day 28th February 2017.Students of Rare Disease Facebook
Bridge the Gap – Syngap ERF began in September of 2014. A group of parents of children living with SYNGAP1 mutations came together to begin a new journey. The common bond is one driven by a desire to raise awareness and search out treatments to improve quality of life for these inspiring individuals.Bridge the Gap – Syngap Education & Research Foundation