365 Days a Year of Rare Disease Day
Today?is Rare Disease Day.?
Last?year on this day, I challenged people to share their stories because stories hold power for change when shared with others.
The?stories I continue?to hear?unite a diverse community. 7,000?different rare diseases, 400 million people spread across the globe. The?unique lived experiences of so many individuals share some common ground. Strength,?hope and determination.
Travere’s dedication?to the?rare community is?integral to who we are as an organization because?many of us are rare disease survivors, patients and caregivers.??
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Following?Rare Disease Day last year, we?launched the?Rare Life campaign ,?a series of written and video stories that feature the experiences of?people with rare liver, metabolic and kidney disorders,?to amplify?the community’s voices 365?days a year.?Personally,?so?much of what I bring?to my work each day is inspired by rare patients, families, caregivers, and advocates:?
The?commitment of?Gayle ,?a mother on a mission to show families living with cystinuria how?to advocate for themselves – and who has built a worldwide online community of people touched by this challenging genetic disease. The persistence?of Kevin ,?who saw racism and assumptions delay his eventual and overdue diagnosis with a rare kidney disorder, focal segmental glomerulosclerosis (FSGS), and who channeled his frustration into action as a volunteer who is raising awareness of FSGS. The?resilience of?Tiffany , who was diagnosed with FSGS in?the middle of a worldwide pandemic and is shaping?her life with a rare disease in?a world turned upside down. The life?joy of?Lillie who continues?to dance while managing IgA nephropathy and the side effects of current treatment options.
When?we listen?to stories?of people turning isolation into connection and exhaustion into determination,?we are committed to turn science into hope.??
Today, we recognize?the rare community because?this is Rare Disease Day. Tomorrow, and every day this year, we will continue to stand with the community, amplifying rare?voices, listening?and learning with?focus and purpose --?because?at Travere, we’re in rare for life.?