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Rare Disease Day 2017

My rare disease is called Mollaret’s Meningitis and is the disease I am raising awareness for on this rare disease day 2017.  Mollaret’s Meningitis is a rare, and poorly understood, disease that is believed to be caused by the herpes viruses.  It is believed to attack internally, instead of externally, causing viral meningitis instead of external sores.  According to a recent patient study conducted by the Mollaret’s Meningitis Association, patient experiences range from rarely having symptoms, to having symptoms of viral meningitis daily.  This is why we need more research into this disease.

Please watch the video I created for the Mollaret’s Meningitis Association talking about my experience with Mollaret’s Meningitis, the official rare disease day video, check out the rare disease organizations, and click the link below to learn more about this rare disease.

Thank you for supporting us in raising awareness for rare diseases!

Life’s Hard; Be Kind

Rare Disease Organizations

Global Genes


Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.

National Organization for Rare Disorders (NORD)

NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 260 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Rare Diseases International

RDI brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations to create the global alliance of rare disease patients and families.

Canadian Organization for Rare Disorders

CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.


EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 738 rare disease patient organisations in 65 countries covering over 4000 diseases.