When it comes to finding patients living with rare diseases, we cast a wide net including non-profit partners, advocacy groups, patient communities and databases, and key healthcare professionals. After all, we’ve been building our rare network since 1999.
Finding and reaching out to patients with rare diseases is difficult, but we’re up to the challenge. Take a look at the network of organizations that we work with to stay connected to the rare community.
The combination of Siren’s digital dexterity and NORD’s (National Organization for Rare Diseases) 30 years of experience in empowering the rare disease community has led to a number of fruitful collaborations. On February 28, 2009, we supported NORD in launching the first US Rare Disease Day, which included creating the online campaign “Alone We Are Rare, Together We Are Strong.”
The Global Genes Project, 1 of the leading rare disease patient advocacy organizations, is focused on building and unifying a global rare and genetic disease community while positively impacting patients within their lifetime.
Patient Advocacy Groups play a vital role in the development of orphan drugs. They give a voice to neglected populations and serve as a liaison between patient communities and pharma companies. By partnering with a wide range of nonprofit patient groups, we’ve had great success with building rare disease communities and connecting patients to the information they need.
Check out our probono app in partnership with Parent Project for Muscular Dystrophy (PPMD)
When it comes to rare diseases, caregivers play a different kind of role—a more active role—in providing care for their loved ones. Caregivers are at the front lines of the battle against rare diseases. They’re looking for answers, raising money for research, running interference with healthcare institutions, nurturing their children, and fighting for a cure.
In recognition of the tenacity of these everyday heroes, we curated stories from caregivers around the United States which resulted in the book Uncommon Challenges; Shared Journeys, a collection of 13 inspiring stories told by parents of children with rare diseases. Order your copy from Siren Interactive Press and part of the proceeds will help support 13 rare charities.