PlatformQ Health

 

Rare Disease Day 2018

World Rare Disease Day is celebrated on the last day of February each year (often February 28, “rarely” on leap day). Since 2008, this day has grown into a global initiative involving more than 90 countries and hundreds of cities to raise awareness of rare diseases and encourage researchers and leaders to address the needs of people living with rare diseases.

Some facts:

  • In the United States, a disease is designated as “rare” if it affects fewer than 200,000 people
  • Combined, rare diseases affect 1 in 10 Americans – more than 30 million people – and more than 350 million people globally
  • 95 percent of rare diseases don’t have an FDA approved drug treatment
  • If living in a single country, the rare disease community would be the third most-populated in the world
  • Half of the people affected by rare diseases are children, 30 percent of whom will not live to see their 5th Overall, 35% of all deaths in the first year of life are from a rare disease.1

At PlatformQ Health, we share the urgency to help patients and caregivers effect change by providing quality, accessible education about their rare conditions to clinicians and patients at their appropriate learning levels. Past programs include patient education on Carcinoid Syndrome with Carcinoid Cancer Foundation and Acute Myeloid Leukemia (AML) with Leukemia and Lymphoma Society, reaching thousands of patients and caregivers, and clinician education on Lennox-Gastaut syndrome (LGS) and Pediatric Neuroblastoma.  We’ve also been proud to partner with Global Genes, a rare disease patient advocacy organization serving patients with any rare disease, to give a digital presence to some of their yearly summit sessions, reaching more than 1,000 patients who weren’t able to attend in person.

We’d be remiss in not mentioning the supporters who’ve helped underwrite rare disease education across our many HCP and patient education channels, like Lexicon, Takeda, Pfizer, Genentech, Lundbeck, CSL Behring, Janssen, Incyte, Grifols, Actelion, Bayer, Verastem and more.

Like the tens of thousands of families who tirelessly advocate for education about the rare diseases of their loved ones, we continue to dedicate ourselves to educating clinicians patients and caregivers about rare diseases. This spring, we’re launching a new educational initiative for clinicians and patients on CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) in partnership with GBS/CIDP Foundation, including one session for patients/caregivers, and another for HCPs.

Other upcoming programs include 2 sessions (one patient, one HCP) about IPF (Idiopathic Pulmonary Fibrosis) and education for patients and HCPs about Follicular Lymphoma.

Please join us in spreading the word about rare diseases!

 

For more information about how PlatformQ Health is reaching patients and educating clinicians about rare diseases, please contact Lauren Alford at LAlford@platformq.com.

 

1 https://globalgenes.org/rare-diseases-facts-statistics/

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