Dedicated Online Platform DuchenneXchange.org Launches to Unite, Support and Educate Duchenne Community
Collaborative site offers a trustworthy, moderated online space where Duchenne families, caregivers, NGOs and pharmaceutical companies can connect and share knowledge
NORWALK, CT (July 31, 2018) — The Duchenne muscular dystrophy (DMD) community now has a dedicated online platform where they can connect and share knowledge – DuchenneXchange (DuchenneXchange.org). Launched today, DuchenneXchange is the one-stop shop for the Duchenne community that was the result of rareLife solutions, a rare disease technology developer and the creators of the online platform, collaborating with CureDuchenne, a leading national nonprofit, as two of the foundational sponsors to make DuchenneXchange possible.
Built by the Duchenne community for the Duchenne community, the DuchenneXchange is a collaborative, inclusive environment where the entire Duchenne community can share comprehensive, safe, credible resources and information as well as get the support they need from diagnosis to treatment to clinical trials. All Duchenne stakeholders, including patients, families, organizations, scientists, advocates, health care professionals, and pharmaceutical companies, are invited to participate.
Duchenne is the most common yet fatal form of muscular dystrophy that affects boys. There are approximately 15,000 boys and young men living with Duchenne in the U.S. and 300,000 worldwide. Typically, boys are diagnosed by the age of five, in a wheelchair by age 12 and most do not live past their late-20s. Care for these boys and young men is comprehensive and involves a health care team of up to 20 specialists.
“Navigating care and clinical trials can be extremely overwhelming for individuals and families living with Duchenne muscular dystrophy,” said Debra Miller, founder and CEO, CureDuchenne.
“That’s why it is crucial to connect families with each other and the medical and research communities early and throughout their journey, so they can get the emotional and medical support they need.”
“DuchenneXchange offers a unique opportunity to truly transform the care of patients and caregivers living with Duchenne today and in the future,” said Dan Donovan, co-founder and CEO of rareLife solutions. “Unlike other social media channels, members of the DuchenneXchange will never see advertising. Instead, this platform serves up trustworthy Duchenne knowledge in a variety of formats to help members along their journey.”
Duchenne community experts, advisors, and community managers oversee the platform content and discussions to ensure a trustworthy, positive environment. In the SMART Social Wall, as key words pop up in conversations, videos, news articles, research, patient advocates, care providers, community activities and clinical trials are posted directly into the conversation – at the point when people are talking about it and receptive to learn more.
Highlights of the DuchenneXchange user interface include:
- rareCourage: SMART social wall that connects members to each other and employs Predictive Information Sharing to identify and share curated resources related to the wall conversations.
- rareCurate: hand-selected disease-specific resource library including Evidence and Education, People & Places, Social & Media, Videos & Visuals, and News & Meetings
- rareClinical: clinical education center that also matches patients to trials and trials to patients.
- rareTeams: private teams to share private conversations.
- myBinder: personal folder of saved information to share with doctors, friends and family.
- Polls & Surveys: for immediate real-world patient/caregiver experiential data to better understand the Duchenne journey.
“Since diagnosis, I struggled to find comprehensive, accurate information that is Duchenne-specific,” said Tammy Henegar, founder of Braeden’s Bridge. “There is also a lot of confusing information floating around out there about Duchenne. The DuchenneXchange seeks to solve that problem and we are excited about this incredible opportunity to engage our amazing Duchenne community and guide them in a positive way.”
“The patient perspective stands at the center of everything we do at Sarepta,” stated Doug Ingram, Sarepta Therapeutics president and chief executive officer. “Enhancing the exchange of information between all those living with and those fighting to improve the lives of those living with Duchenne will benefit families now and improve all of our chances of rapidly developing and providing access to life-improving therapy and care in the future.”
“It is wonderful to partner with patient advocacy organizations on this breakthrough opportunity to unite the community,” said Mary Frances Harmon, senior vice president, Corporate Relations, PTC Therapeutics. “We are thrilled to be part of the DuchenneXchange and look forward to watching it flourish.”
“We have experience with this type of platform for other rare disease communities and recognize the need for the Duchenne community to come together to learn from each other as experts and to support each other as members of a shared journey,” said Katherine Beaverson, MS, senior director and Patient Advocacy Lead, Rare Disease Research Unit, Pfizer Inc. “We are proud to play a role in supporting this important program and we hope that it meets the education and support needs of the community.”
Duchenne community members are invited to learn about the benefits of the DuchenneXchange in an upcoming webinar:
Date/Time: Tue, Aug 7, 2018, 1:00 PM (PDT) / 4:00PM (EDT)
Audio Details: Dial-In Number(s):
U.S. & Canada: 800-289-0459
Access Code: 680580
Registration Link: https://cc.readytalk.com/r/5gy4l06twvd2&eom
CureDuchenne is the leading nonprofit dedicated to extending and improving the lives of 300,000 boys worldwide who have Duchenne muscular dystrophy, a degenerative disease with no known cure. CureDuchenne uses an entrepreneurial venture philanthropy model to fund impactful research and accelerate human clinical trials. Through its CureDuchenne Cares program, it provides confidence to families seeking valuable resources, trains physical therapists and other health professionals on new standards of care and provides hope, support and empowerment to the Duchenne community. For more information, please visit www.cureduchenne.org, and follow us on Facebook, Twitter and YouTube.
rareLife solutions is the health tech, design and research team behind oneSCDvoice, oneFAPvoice, and additional customized rare disease platforms. rareLife solutions, focused solely on rare diseases, offers integrated strategic and tactical community engagement plans, medical communications and reimagined rare publication planning services in addition to our collaborative platform as a service (PaaS) solutions for advocacy groups, pharmaceutical and device companies, medical and research centers, contract research organizations and professional healthcare associations. To learn more, please visit us at https://www.rareLifesolutions.com and https://www.onevoice.world, follow us on Twitter at @rareLifeTalks and @onevoiceworld, join us on LinkedIn, and like us on Facebook at Facebook.com/rareLifeSolutions and Facebook.com/onevoiceworld.