The GASCDO Board of Directors is pleased to Announce Judy Grandison as its NEW President/CEO!

The GASCDO Board of Directors is pleased to Announce Judy Grandison as its NEW President/CEO! On behalf of the board of directors of GASCDO, it is my greatest pleasure to announce the appointment of Ms. Judy Grandison as President/CEO effective immediately. She is the parent of a child living with Sickle Cell Disease (SCD) and the President of Camp Jumoke (CJ). CJ is Canada’s first medically supervised, overnight camp for children living with SCD established in 1994 in Ontario, Canada. To date, Camp Jumoke provided the opportunity for over 700 children living with SCD to attend summer camp. Through this outdoor experience, children living with SCD develop an appreciation for their own capabilities as well as learn vital social and outdoor skills. The camp also provides educational support by way of an annual scholarship towards post-secondary educational costs. Since the inception of this award, Camp Jumoke has presented 19 scholarships to some of tomorrow’s leaders. Judy’s decision to join the board of Camp Jumoke came shortly after her son was diagnosed with SCD in 2007 (a diagnosis that came through the fact that SCD was recently added to newborn screening tests performed in Ontario). She has been an active supporter of the SCD community for over 25 years. As a member of the Camp Jumoke family, she has held various leadership positions inclusive of Event Director, Vice-President, and now, current President. With over 25 years of management and leadership experience in both the public and private sectors, Judy has developed skills which have allowed her to manage conflicting priorities and work towards equitable outcomes with stakeholders of all levels. She has led and participated in countless community-based projects and events. She holds a Bachelor of Education in Adult Education and a diploma in Accounting and Business Administration and is currently studying Massage Therapy. Judy has welcomed her nomination with humility and a great sense of responsibility. To the Sickle Cell Community around the world, please join me in congratulating and warmly welcoming President/CEO Judy Grandison. M. ISSA ALI Chair GASCDO

GASCDO Highlights the Global Diversity of Sickle Cell Disease on World Sickle Cell Day

Ontario, Canada— On June 19th, 2020 the Global Alliance of Sickle Cell Disease Organizations (GASCDO) will be witnessing the World Sickle Cell Day and continuing to provide a global voice and perspective for persons affected by Sickle Cell Disease / Trait. Sickle cell disease (SCD) is one of the most common inherited blood disorders in the world. GASCDO, its member organizations, collaborators and stakeholders understand that it is important that the needs of SCD patients and their families are put on the forefront of the global conversation. A key objective of GASCDO is to collaborate and catalyze impactful actions and initiatives to improve the standards of care for SCD patients particularly those living in low and medium-resource countries, as well as address the stigmas associated with the disease worldwide. GASCDO’s “Sickle Cell in My Language” campaign reflects the global diversity of this devastating disease, but more importantly, shares what it means to be strong living with SCD from individuals globally. Through advocacy of the Sickle Cell Disease International Organization (SCDIO), the support of the Republics of Congo and Senegal, the commitment of the scientific world, the African Union (in 2005), the UNESCO (2005), the WHO (2006), and the United Nations (2008), SCD  was recently recognized as a public health priority. The 19th of June has been designated the ‘World Sickle Cell Day’, a day for us all to pause and reflect on the burden of this disease, to recognize the struggle and the resilience of those affected, and to raise awareness of the disease worldwide. With these important collaboration frameworks, these recognitions should lead to more concrete actions and are to be supported by strengthened partnerships at national, regional, and international levels. In healthy individuals, red blood cells are round and flexible and move freely through blood vessels to distribute oxygen to all parts of the body.  Individuals with SCD have red blood cells which are “sickle” in shape, sticky, and nonflexible.  These structurally modified red blood cells die prematurely leading to hemolytic anemia and block small blood vessels leading to vaso-occlusion, inflammation, hypercoagulability, and organ failure.  Persons with SCD often experience severe...

COVID-19: Survey for the Global SCD Community

As COVID-19 pandemic continues throughout the world, let's work to ensure the global sickle cell community is safe!  To help GASCDO better understand and respond appropriately to the needs of the global SCD community around COVID-19,  please complete our short survey and we thank you for your time. Who can complete the survey: Patients, caregivers, care providers, and the industry.

COVID-19: Patients and Caregivers

About COVID-19 COVID-19 Information for SCD Community 1. A brief overview about Corona virus (COVID-19) Coronavirus (COVID-19) outbreak started in late 2019 and developed into global pandemic by March 2020. In some countries, this virus is spreading very quickly with some people dying from it. Even though this disease is new and information about its spread and possible complications in SCD is unknown, it is crucial to avoid catching this infection or spreading it to those around you. SCD is considered an immuno-compromised condition, which makes those living with sickle cell disease more susceptible to infections. We hope this Coronavirus (COVID-19) pandemic comes to an end soon but at present, there is no timeline for Covid-19, therefore it is advisable to take precautions to stay healthy. 2. What are the symptoms of Corona virus (COVID-19)? People who get infected with this virus may have no symptoms at all or have very mild and barely noticeable flu like symptoms. However, some may have high fever and respiratory symptoms as cough, difficulty in breathing and sore throat. In severe cases, respiratory symptoms can worsen over a short period of time and lead to fulminant lung disease necessitating admission to the intensive care and ventilatory support. Generally, children have milder disease than adults but they can transmit the virus to older people around them.People who are more likely to have severe COVID-19 disease are the elderly and those with chronic diseases. These include individuals living with SCD and other blood disorders, chronic lung disease, kidney failure on dialysis, diabetes, hypertension, cancer and those receiving drugs that decrease their immunity or who have undergone a bone marrow or solid organ transplant. In SCD, additional symptoms and signs not related to the respiratory system as severe pain and increasing pallor may be seen with Coronavirus infections. It is known that viral infections such as the flu can trigger vaso-occlusive crises (pain, acute chest syndrome) and lead to a sudden drop in hemoglobin in persons affected with SCD. While there is currently no accurate scientific data to show that patients with SCD are more likely to have severe COVID-19 disease, various studies have shown...

What is sickle cell disease

What is sickle cell disease Sickle cell disease (SCD) also known as sickle cell anemia, is the most common genetic disease in the world.  It is caused by an abnormal form of hemoglobin and is passed on to a child from both the mother and the father of the child. SCD affects hemoglobin which is a protein that carries oxygen in red blood cells to all tissues of the body. Sickled red cells stick to each other and to blood vessel walls. This can block the flow of blood to different parts of the body and over time, some tissues may become damaged. In SCD patients, the red blood cell loses its normal shape and become stiff and crescent-shaped. Sickled cells are fragile and do not survive as long as normal red blood cells making individuals with SCD anemic. This means they may look pale and feel weak. There are different types of sickle cell disease depending on which genes have been passed from the parents to the child. The most common types of SCD are Hemoglobin SS Hemoglobin S-ß thalassemia Hemoglobin SC Out of the 300,000+ babies born globally with severe forms of sickle cell disease annually, sub-Saharan Africa (especially Nigeria and the Democratic Republic of Congo) and India bear half of the global burden of SCD. From its origin in sub-Sahara Africa, Arabian Penisula and Indian sub-continent, population migration has also increased SCD prevalence in areas not previously associated with the disease such as the USA, Western and Northern Europe. SCD is a global health issue… In high resource countries with less than10% of global SCD burden, babies born with SCD can now be expected to survive into adulthood; while low and medium resource countries such as in the sub-Saharan Africa have high incidence of disease and limited resources to support the affected. Sadly, this has led to inadequate care and treatment of the affected in these  countries resulting in many newborns dying before the age of five years old while others lived shortened lives marked by significant morbidity. In 2010, the WHO released national health care management goals and set targets to be achieved by the countries in sub-Saharan Africa for the control and...

Carol Ossai Announcement 2020

Announcing the passing of Carol Ossai, the interim Chair of the Board of Directors, Global Alliance of Sickle Cell Disease Organizations (GASCDO). It is with utmost sorrow and much sadness that we announce the passing of Carol Ossai, which occurred on Friday, April 10th, 2020. Carol’s passion to advocate for the improvement of care and treatment for people living with SCD started in 1996, after her son living with SCD suffered a stroke. This initiated the formation of the Sickle Cell and Young Stroke Survivors -a UK charity supporting children, young people and their families in the UK and Africa. From this period on, Carol dedicated her life to Sickle Cell Advocacy leaving behind her career in Food and Consumer studies. Carol also founded the Sickle Cell in Africa Patient Parent Network (SCAPPN)- a network of patients and parents directly affected by SCD that led grassroot initiatives in Africa. In 2019, Carol became a founding member and was later elected as the interim chair for GASCDO, a recently initiated global sickle cell disease (SCD) patient organization dedicated to inspiring hope and improving the quality of life of all people with SCD worldwide. An Eupati Alumna, Carol was an expert in patient/parent advocacy, public speaking and was an EUPATI Fellow with a keen interest in research and development of drugs for rare diseases. Carol was a selected reviewer with the European Medicines Agency and a selected member of the Innovative Medicines Initiative (IMI) pool of expert patients. GASCDO extends its condolences to the family members that Carol left behind and to the global SCD community. We believe that Carol would want us to continue working steadfastly in servicing the global sickle cell community as she whole heartedly did all through her life path. Carol’s positivity, compassion and resilience will remain a guiding legacy for all of us in GASCDO and for generations of SCD people to come. Released by: GASCDO on April 12th, 2020.

Global Sickle Cell Disease Family Network

Do you or someone you know have SCD? Will you like to connect with other families affected by SCD across the globe? To join GASCDO's Global SCD Family Network, you must agree to our guidelines below.   Guidelines for The Global Sickle Cell Disease Family Network Description  A patient-centered online network created to support the primary sickle cell disease community globally (individuals living with SCD, their families and patient organizations). Objectives Empower and educate patients and families on various topics including tips on managing sickle cell disease (SCD), clinical trials and research studies Build awareness and increase the level of knowledge/understanding of SCD among people of all ages and backgrounds, wherever they reside Determine the educational and support needs of those living with SCD, their caregivers and patient organizations Connect families with SCD to the patient organizations in their localities Connect patient organizations to one another Reduce stigma and discrimination experienced by persons living with SCD all over the world. Who can join?  People living with SCD, Families, caregivers, friends and co-workers of people living with SCD Patient organizations, Advocates and volunteers of the SCD community. What can be shared on the forum Strictly SCD related news, stories and updates All information to be shared must be vetted by at least one of the administrators of the forum. Proposed materials must be forwarded to at least one of the administrators a minimum of 72 hours before the intended posting date. Only approved materials may be posted. Other rules of the forum No one-on-one conversations on the forum Acknowledge questions/ surveys if asked. If unable to, please send a private message to the administrators The forum is not a political platform, no arguments or disrespect allowed Ensure that you are posting accurate information, check your sources before you share Never EVER use the forum to berate someone else or air grievances. If you have an issue, address it with the relevant person outside of the forum The forum cannot be used to promote personal business Drugs approved by National health agencies may be promoted.  Topics Once a week, administrators will post a topic for people to discuss, please ensure you participate as much as possible We may also invite care providers, patients and families to address and lead some of the discussions...

SUBSCRIBE TO OUR NEWSLETTER

The GASCDO Community Newsletter connects you with people living with sickle cell disease and the work being done globally by NMOs and RMOs. The newsletter includes Newsletter Global SCD Family Network Global Care Providers Network SUBSCRIBE TO OUR NEWSLETTER First Name Last Name Email: Country Afghanistan Aland Islands Albania Algeria American Samoa Andorra Angola Anguilla Antarctica Antigua and Barbuda Argentina Armenia Aruba Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bermuda Bhutan Bolivia Bonaire, Saint Eustatius and Saba Bosnia and Herzegovina Botswana Bouvet Island Brazil British Indian Ocean Territory British Virgin Islands ...

Coronavirus (COVID-19) and Sickle Cell Disease (SCD)

Global Alliance of Sickle Cell Disease Organizations Statement on Coronavirus (COVID-19) 1. A brief overview about Coronavirus (COVID-19) Coronavirus (COVID-19) outbreak started in late 2019 and developed into global pandemic by March 2020. In some countries, this virus is spreading very quickly with some people dying from it. Even though this disease is new and information about its spread and possible complications in SCD is unknown, it is crucial to avoid catching this infection or spreading it to those around you. SCD is considered an immuno-compromised condition, which makes those living with sickle cell disease more susceptible to infections. We hope this Coronavirus (COVID-19) pandemic comes to an end soon but at present, there is no timeline for Covid-19, therefore it is advisable to take precautions to stay healthy. 2. What are the symptoms of Coronavirus (COVID-19)? People who get infected with this virus may have no symptoms at all or have very mild and barely noticeable flu like symptoms. However, some may have high fever and respiratory symptoms as cough, difficulty in breathing and sore throat. In severe cases, respiratory symptoms can worsen over a short period of time and lead to fulminant lung disease necessitating admission to the intensive care and ventilatory support. Generally, children have milder disease than adults but they can transmit the virus to older people around them.People who are more likely to have severe COVID-19 disease are the elderly and those with chronic diseases. These include individuals living with SCD and other blood disorders, chronic lung disease, kidney failure on dialysis, diabetes, hypertension, cancer and those receiving drugs that decrease their immunity or who have undergone a bone marrow or solid organ transplant. In SCD, additional symptoms and signs not related to the respiratory system as severe pain and increasing pallor may be seen with Coronavirus infections. It is known that viral infections such as the flu can trigger vaso-occlusive crises (pain, acute chest syndrome) and lead to a sudden drop in hemoglobin in persons affected with SCD. While there is currently no accurate scientific data to show that patients with SCD are more likely to have severe COVID-19 disease, various studies...