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


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.


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


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


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...]