We have been fortunate to have the support and assistance from the below organisations and communities since the movement began in 2016.
“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 – https://aneinternational.org/
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
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
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
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 https://www.facebook.com/glitterqueensglobal. Glitter Queens Global has now become a cause.
Glitter Queens Global
The Hashimoto’s Encephalopathy SREAT 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 Alliance website
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.
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.
iPain Foundation website
Medics 4 Rare Disease
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 Diseases website
Working to connect all members of the Rare Disease community. Together we are stronger!
Rare Disease Connection Facebook page
Putting Rare Diseases Patients First!® provides information about the new medicine development process to patients with rare diseases, and the parents of children with rare diseases. This information is provided free of charge, using real time Webinars, a Blog, a newsletter, and social media. You can connect with the organization on www.puttingrarediseasespatientsfirst.org #dazzle4rare
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.
Founder Samuel Agyei Wiafe
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.
Promoting research, education, and continuous support to end undiagnosed and misdiagnosed Ring20 epilepsy.
Ring20 Research and Support website
A group of students determined to raise rare disease awareness. Launch date: World Rare Disease Day 28th February 2017.
Students for Rare Disease Facebook page