Pharmac Seeks Feedback on New Rare Disease Fund

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Pharmac is seeking public feedback on a new funding approach specifically geared for high-cost medicines for rare disorders. The use of a contestable fund, worth an estimated $5 million a year, will be tested this year, Pharmac chief executive Steffan Crausaz says. Suppliers will compete for the fund, which could then lead to lower prices for traditionally expensive medicines, Mr Crausaz … [more here...]

Boston Marathon: Genzyme Runners Supporting ‘Rare’ Cause

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By Anamika Roy Daily News Staff A team of Genzyme employees is running for a “rare” cause on Marathon Monday. In partnership with the National … [more here...]

May is Williams Syndrome Awareness Month! Learn How You Can Support the Cause.

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Organization: Williams Syndrome Association Submitted by: Mike McFall Thousands of children and adults are expected to join the Williams Syndrome … [more here...]

Mom of Son with Lowe Syndrome Leaves Job as NASA to Help Educate Others

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Why does he have glasses so young?  Why is he small for his age?  What is Lowe Syndrome?  These are just some of the questions I get asked often … [more here...]

GLOBAL GENES™ Launches “RARE Toolkits” as Premier Educational Resource for the Rare Disease Community

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Series of RARE Disease Toolkits Enable Advocates, Patients and Caregivers to Empower Themselves and Inspire Others With 1 in 10 Americans living with … [more here...]

A Foundation Building Strength Requesting Applications for Research, $1 Million in Funding

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A Foundation Building Strength is excited to announce funding of up to $1 million dollars to a winning grant who provides the best proposal on … [more here...]

New Educational Toolkits from Global Genes Demystify Rare Community’s Biggest Problems

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Ask any parent to whip out their highlighted copy of the latest edition of Parenting a Child with a Life-Limiting Illness and you'll be met by blank … [more here...]