Resources

Location: Brewster, MA About: Dream Day on Cape Cod provides a weeklong camp for families of children with chronic illnesses. Applications are online. Applications close on Friday 04/05/24. Visit Their Website For More Information:

Location: MA About: Provides support meetings, wellness programming (living well with sickle cell disease), and peer-to-peer network among other supports. Visit Their Website For More Information:

About: Available to children under the age of 20 years old. Their Adventure in a Box (which is mailed quarterly) program offers activities with a specific theme. For example, a past quarter had a Friday Night Magic theme; this included a box with supplies to perform magic tricks, and a date/live instruction by a magician on how to perform tricks. The referral form can be found on the website. Visit Their Website For More Information:

About: The following resource will be available to your child when they turn 13. Available to individuals with chronic illnesses (including SCD) ages 16 through 25 years old. Provides conferences (ages 18 – 29) and ongoing programming includes STRIVE (afterschool homework/mentoring program online), Song Studio (music therapy), and Mass STYLE Mentoring (3-month mentoring) to ages 13—29. More Information: Contact person is Kepler Jeudy, Program Director kepler@nextstepnet.o

About: Community connections. More Information:

About: The Democratizing Education for Sickle Cell Disease Gene Therapy project invited more than 50 stakeholders to participate in a series of workshops. These stakeholders represented the following groups: patients, parents of patients, health-professionals, community-based organizations, advocacy groups, industry leaders, government representatives and researchers. More Information:

About: Resources meant to provide information and guidance regarding sickle cell disease, treatments and possible complications. More Information:

About: Information on fertility preservation for people born with testes More Information:

About: Information on fertility preservation for people born with ovaries that have been diagnosed with Sickle Cell Disease More Information

About Handout information on what Gene Therapy is currently available for Sickle Cell Disease More Information