Does your strategy call for a nonprofit partner? How about a connection to the small universe of key opinion leaders? Maybe you need to build a patient database prior to launch. Whatever your needs, Siren has the connections to find strategic partners who will expose your brand to new audiences across the world of orphan drug marketing.
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 National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. The combination of Siren’s digital dexterity and NORD’s 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.”
NORD has recognized Siren Founder and President Wendy White as a trusted advisor by naming her a Director at Large on their Board of Directors.
The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope. What began as a grassroots movement in 2009 with a few rare disease parent advocates and foundations has grown to over 500 global organizations.
We’re proud to be members of the Global Genes Project’s RARE Corporate Alliance. With the spirit of teamwork and positivity as its focal point, the goal of the RARE Corporate Alliance is to facilitate collaboration and be a source for an information exchange between patients, nonprofits, healthcare professionals, industry leaders, policy makers, and more.
On September 20, 2013, Siren President Wendy White was the MC of Global Genes’ Second Annual RARE Patient Advocacy Summit. The Summit was an inspiring gathering of rare disease patients, caregivers, and advocates, all of whom came together to discuss the challenges faced by the community and the collaborative efforts that are reshaping care for people living with rare diseases.
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 cooperating 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.
When Parent Project Muscular Dystrophy (PPMD) needed a tool to help Duchenne patients and caregivers find clinical trials, they came to Siren to leverage our digital prowess and our rare expertise.
Our solution was Duchenne Central, a mobile app that allows patients and caregivers to learn about clinical trials and get contact information for clinics. Users can also bookmark relevant trials and stay up-to-date on ongoing developments. The mobile format of this tool enables an easy-to-use, on-the-go experience.
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 began curating stories from caregivers around the United States. The result was Uncommon Challenges; Shared Journeys, a collection of 13 inspiring stories told by parents of children with rare diseases.
You can order copies of Uncommon Challenges; Shared Journeys from Siren Interactive Press. All of the money raised from book orders will be donated to 13 nonprofits chosen by the book’s authors.