We are delighted to announce the launch of MyHemophiliaTeam, a free social network for people facing hemophilia and other blood disorders. We greatly appreciate the input and advice we’ve received from the people and foundations involved in the blood disorder community. The single biggest piece of advice we received was to “Be Transparent!” So here is the full scoop about MyHemophiliaTeam.
What Is MyHemophiliaTeam?
MyHemophiliaTeam is a free, password-protected social network where you can connect with others in the hemophilia community on your phone, tablet or computer. You can share tips, support, Q&A, provider referrals and more with other people who “get it”.
- MyHemophiliaTeam.com is a completely independent social network. It is not controlled by any pharmaceutical company or any other organization.
- MyHemophiliaTeam NEVER shares the personally identifying information of its members with anyone!
- MyHemophiliaTeam is a monitored site that does not allow selling of any services or products. Also, members of the community are given simple features to report inappropriate content (such as solicitations for home care services, factor products or fundraisers – all of which are prohibited).
Who Is MyHemophiliaTeam For?
- Adults diagnosed with a bleeding disorder
- Spouses of someone diagnosed with a bleeding disorder
- Parents of children with a bleeding disorder
MyHemophiliaTeam is NOT for:
- Children under the age of 18
- Doctors (no medical advice is given on MyHemophiliaTeam)
- Specialty pharmacy companies
- Homecare companies
- Pharmaceutical companies.
Who is Behind This?
MyHemophiliaTeam was created by us, MyHealthTeams, a fully independent, mission-driven company based in San Francisco. We believe that if you’re diagnosed with a chronic condition such as hemophilia, it should be easy to connect with others who share the same diagnosis and who understand what it’s like to live with that condition.
MyHemophiliaTeam is the 14th chronic disease community now served by MyHealthTeams. Over 330,000 people facing chronic conditions from autism and epilepsy to breast cancer and lupus have joined our social networks. Members of the hemophilia community have been encouraging us to launch MyHemophiliaTeam for two years now and we are delighted to be responding.
How is this Funded? How Does MyHealthTeams Make Money?
MyHealthTeams will fund MyHemophiliaTeam by partnering with pharmaceutical companies to do anonymized, aggregated research and to promote objective, patient education resources. Any such partnership must follow two key litmus tests:
- Partnerships must be made transparent to our members
- Partnerships must empower our members
Through such partnerships we keep our social networks free for anyone facing a bleeding disorder, while making sure our members needs, concerns, and experiences are voiced on an anonymous basis.
Who is Partnering on MyHemophiliaTeam?
MyHealthTeams will partner with Biogen to do anonymized research projects over the next 2 years.
- We will NEVER share your personal identifying information with Biogen or any other organization outside of MyHemophiliaTeam
- Biogen will NOT have any control over the content on MyHemophiliaTeam, will NOT be participating on the social network, and will NOT have any access to the personally identifying information of members.
- Biogen will endeavor to share the research it does on MyHemophiliaTeam back with the members in the community
Our Relationship with the Community
Before launching MyHemophiliaTeam, we reached out to many of you in the hemophilia community, including members of local bleeding disorder chapters, the National Hemophilia Foundation, the Hemophilia Federation of America and the Coalition for Hemophilia B. These conversations have been honest, critical and informative, as we have worked to establish a safe environment for those in the community. Community outreach doesn’t end with these initial conversations. It’s an ongoing dialogue that we will continue through your feedback on MyHemophiliaTeam.com. We greatly appreciate the initial input we have received from these leaders at the three leading foundations in blood disorders:
- Hemophilia Federation of America: Kimberly Haugstad, Executive Director
- National Hemophilia Foundation: Dawn Rotellini, Vice President of Chapter Development and Education
If you belong to one of these great organizations, we encourage you to share feedback about MyHemophiliaTeam with them as well as with us. We expect to continuously improve and iterate on MyHemophiliaTeam.
Try It Out!
In the meantime, if you have a bleeding disorder or your child or spouse does, we hope you will join www.MyHemophiliaTeam.com and provide some of the early feedback that will help shape the next version of MyHemophiliaTeam. It’s free to sign up.
You can always contact us with any questions or feedback by emailing us at support@MyHealthTeams.com
All the best,
Eric Peacock, Mary Ray and the entire team at MyHealthTeams