News Feature | March 3, 2014

Genzyme Recognizes International Rare Disease Day

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By Estel Grace Masangkay

Sanofi company Genzyme launched the fourth annual Patient Advocacy Leadership (PAL) Awards along with a series of initiatives in recognition of International Rare Disease Day.

Observed every year on the last day of February, International Disease Day is an international awareness campaign initiated by patient group EURORDIS. This year’s theme “Care: Join Together for Better Care” marks the seventh International Rare Disease Day.

Genzyme launched the PAL Awards to support non-profit patient organizations which work on behalf of patients living with lysosomal storage disorders (LSDs). LSD is a group of rare, inherited disorders which cause progressive and debilitating health problems. Eight recipients from different countries around the world received more than $100,000 from Genzyme’s global grant program last year.

In addition, the company also launched the following initiatives on its company sites worldwide partnering with local patient organizations:

  • Genzyme is partnering with the Hong Kong Alliance of Patients’ Organizations (HKAPO), the Hong Kong Mucopolysaccharidoses and Rare Genetic Diseases Mutual Aid Group (HKMPS), and various stakeholders to organize a roundtable on rare disease policy development. HKAPO will use the output of the meeting to develop a white paper report on rare disease policy in Hong Kong.
  • In France, Genzyme has joined forces with the patient association Alliance Maladies Rares to explain rare diseases to children by creating a partnership with the newspaper “Mon Petit Quotidien.” The proposed program is developed for French schools.
  • Genzyme is working with the Philippine Society for Orphan Disorders, Inc. (PSOD) to hold a Household Business Forum teaching caregivers of rare disease patients how they can earn a living while staying home to care for their family member.

Kimberly Kubilus, Director of Family Services at NTSAD, and also 2011 and 2013 PAL Award Recipient, said, “We are genuinely grateful to Genzyme for this opportunity to further cultivate and foster a strong sibling community which will also give parents and providers a deeper understanding of the sibling experience.”