It’s caffeination for a cause.
Local companies Cambridge BioMarketing and BeanTowne Coffee House & Cafe have joined together to create a unique way to observe Rare Disease Day on February 29. With The First Annual Coffee Fix: A Benefit for Rare Disease Day, BeanTowne will donate 5% of its profits to the National Organization for Rare Disorders (NORD) on Rare Disease Day (2/29/12) to be matched by Cambridge BioMarketing. The purpose of the event is to focus attention on the needs of patients and families affected by rare diseases.
“We invite everyone from the community to come by and help us observe Rare Disease Day, have a coffee or a sandwich, and feel really good about what they’re doing,” said Maureen Franco, Chief Strategy Officer of Cambridge BioMarketing.
“So many of our local customers and companies are developing new drugs for rare disorders; we think this is a great way to celebrate their research and raise money for a great organization,” said Meg Taintor, manager of BeanTowne.
Taintor added that prices will not be higher than normal during the Coffee Fix event.
“Same prices, same great service. The more people who come and dine with us, the more support goes to rare diseases,” she said.
The First Annual Coffee Fix: February 29, 2012 7AM–5PM
1 Kendall Square, Cambridge, Massachusetts 02139
About rare diseases
In the United States, any disease affecting fewer than 200,000 Americans is considered rare. According to the National Institutes of Health (NIH), there are nearly 7000 such diseases affecting nearly 30 million Americans.
Studies have shown that it often takes 5 years or longer to get an accurate diagnosis of a rare disease. In addition, only about 200 of the diseases classified as rare have approved treatments.
The challenges of living with a rare disease include:
- Difficulty getting a timely, accurate diagnosis
- Too little research
- Too few treatments
- Reimbursement or other issues affecting access to treatments
- A sense of isolation
- Difficulty finding medical experts
About Rare Disease Day
Rare Disease Day was launched by EURORDIS (Rare Diseases Europe) in 2008. Last year, it was observed in more than 60 countries, with a national sponsor in each country. NORD is the sponsor in the United States.
“This is a global observance,” said Peter L. Saltonstall, president and CEO of NORD. “Individuals and organizations around the world will all be sharing stories of how rare diseases affect their lives.”
More than 500 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day partners on the national website hosted by NORD (www.rarediseaseday.us). Cambridge BioMarketing, the world’s leading orphan and specialty drug communications company, is one of those partners.
Each year, a global planning team selects a theme for Rare Disease Day. The theme for 2012 is, “Rare but strong together.”
Rare Disease Day activities in the United States will include a “Handprints Across America” campaign to create a gallery of photos on the Rare Disease Day website, educational materials for classroom teachers, and a nationwide blitz of patient photos, stories, and videos to increase awareness of specific rare diseases and the challenges of living with a rare disease.
Several special events are planned, including a scientific symposium at the National Institutes of Health (NIH) and a Rare Disease Patient Advocacy Day at the Food and Drug Administration (FDA).
“Since many of these diseases are genetic, more than half of the people who have rare diseases are children,” Saltonstall said. “The problems encountered by families are enormous. It’s important for these families to know they are not alone.”
About NORD
NORD was established in 1983. It provides advocacy, education, research, and patient services on behalf of rare disease patients, families, and patient organizations.
About Cambridge BioMarketing
Orphan products represent the best of medicine—and the best of humanity. That’s why they’re our primary focus. As the world’s leading orphan and specialty drug communications company, our services include strategic consulting, brand planning, and brand management, as well as professional marketing communications and direct-to-patient communications. Our work is award-winning, but more important, we believe it’s life-changing. For patients. Physicians. And for our clients.
About BeanTowne Coffee House & Café
We take your coffee, food, and happiness seriously. We know life is complicated and stressful and sometimes not very nice, so we work hard to make the food you eat, the coffee you drink, and the time you spend here at BeanTowne the very best of your day.
###
