Posts Tagged ‘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…
Read MoreWEBINAR 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…
Read MoreFDA 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…
Read MoreASGCT 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…
Read MoreHolistic 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…
Read MoreSickle 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…
Read More7th 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…
Read MoreSCD Seminar & Hotel Registration 2018
Reserve Your Hotel Room Today for SCD Seminar! All SCD Warriors who register before August 15th are guaranteed a bed at the fabulous Courtyard by Marriott! That means , for $25 the SCD Warrior gets: A bus ride to Sacramento from one of 5 routes to the SCD Seminar To stay four nights at one…
Read MoreGenetic 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…
Read MoreSpecial Pricing on Books for World Sickle Cell Day
Special Pricing on Books for World Sickle Cell Day!
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