Parents and Caregivers

SC Handbook for Parents and Caregivers

Knowledge and Confidence to Tackle SCD Sickle Cell Disease is well known for the pain that it causes. What isn’t widely researched is the emotional stress that families go through due to the unpredictable episodes of pain, hospitalizations, risk of death, and more. Treatment options are few, and curative therapies like bone marrow transplants and […]

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WEBINAR SERIES Sickle Cell Science: Path to Progress

WEBINAR SERIES Sickle Cell Science: Path to Progress To commemorate Sickle Cell Awareness Month 2019, this September the National Heart, Lung, and Blood Institute (NHLBI) and partner agencies and institutions will host Sickle Cell Science: Path to Progress, a four-part webinar series that will discuss genetic therapies, progress in pain management, bone marrow transplants and other therapies, and

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FDA Public Meeting – Patient Perspectives on the Impact of Rare Diseases

Registration Open: FDA Public Meeting – Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities On Rare Disease Day, FDA announced the Agency will host a public meeting – “Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities” on April 29, 2019. The purpose of the meeting is to obtain patients’ and caregivers’ perspectives on the impacts

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ASGCT Patient Education on Blood Disorders

What is this? The American Society of Gene & Cell Therapy (ASGCT) is proud to announce the first release of the Society’s Patient Education program, a new initiative for 2019. The new patient-centered portal is designed by ASGCT committee volunteers in coordination with patient advocacy groups to educate and inform patients, families, and the general

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Holistic Health and Sickle Cell Disease Webinar

Holistic Health and Sickle Cell Disease: A focus on Mental and Behavioral Health Thursday, February 28, 2019 1:00 – 2:15 pm EST Register Here Sickle cell disease (SCD) affects millions globally, disproportionately impacting certain racial and ethnic minority populations, including African Americans, Latinos and people of Middle Eastern, Indian, Asian and Mediterranean descent. According to

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Sickle Cell Disease Therapeutics Conference

Annual Sickle Cell Disease Therapeutics Conference September 13, 2018 GBT will host the 7th Annual Sickle Cell Disease Therapeutics Conference (SCDTC) at the Park Central Hotel in New York City on September 13, 2018.  This annual meeting brings together healthcare professionals, patients, community based organizations and advocates, investors, policy makers and industry representatives. They will

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7th Annual Sickle Cell Disease Therapeutics Conference

The 7th Sickle Cell Disease Therapeutics Conference is a meeting to find the latest news and trends in the SC world. Also, people will hear from new industry leaders, patients, physicians, CBOs and biotech companies. For more information about the day, email scdconference@gmail.com Apart from this, click here to register. Hear from the President and

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Genetic Testing for Families

Genetic Testing for Families Affected by Genetic Recessive Disorders DNACheckup is a fairly new non-profit organization. It is geared towards providing affordable DNA testing to families of patients with previously diagnosed recessive genetic disorders. First, patients can order the tests online. Tests ship directly to the person who orders them. We work with the lab

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