Rare Community Profiles: How the #RAREis Global Advocate Grant Supported the E. WE Foundation: A Discussion with Sarita Edwards
Photo courtesy of Sarita Edwards

Rare Community Profiles: How the #RAREis Global Advocate Grant Supported the E. WE Foundation: A Discussion with Sarita Edwards

Rare Community Profiles     Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…

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Family That Lost Newborn to Trisomy 18 Hosting Fundraiser to Give Back to Hospice Center that Supported Them
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Family That Lost Newborn to Trisomy 18 Hosting Fundraiser to Give Back to Hospice Center that Supported Them

According to a publication from the Basingstoke Gazette, a Basingstoke family is raising money for the children's hospice center that supported them through the loss of a child. Jessica and…

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Edwards Syndrome Gave Their Daughter Only Weeks to Live, But This Couple is Trying To Make the Most of It
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Edwards Syndrome Gave Their Daughter Only Weeks to Live, But This Couple is Trying To Make the Most of It

According to a story from the Daily Post, Katie Roy and Tjay Narciso were horrified when doctors told them that their new born daughter Kaila will only survive for a…

Continue Reading Edwards Syndrome Gave Their Daughter Only Weeks to Live, But This Couple is Trying To Make the Most of It