Join the Dazzle4Rare Movement
We need more than advocacy, we need a movement.
It’s simple: every movement has a mission. Ours is to reach closed communities, transcend geographic borders, and create social change for undiagnosed and rare patients.
Meet Our 2020 Co-Hosts
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.
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.
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.”
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
Offical Facebook Page
Working to connect all members of the Rare Disease community. Together we are stronger!
Founder of Rare Disease Connection
According to their website, aneinternational.org, “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.”
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.
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.