Thank you for joining us on October 19th, 2017 for SCDANS’ Research and Clinical Trials Family Engagement Session!
37 Healthcare professionals, patient families, and students joined us to learn more about Sickle Cell Disease and disease management therapies. Hematologists and patient families provided insight into daily care routines, and shared experiences in a supportive environment. Action items identified during the session included establishing an adult-care clinic that follows pediatric hematologist Dr. Victoria Price’s blueprint clinic at the IWK, as there currently is specific clinic that follows youth once they become adults. This will be part of the Association’s national strategy
Presenters kindly shared their presentation materials – please take a look and share with patient families and healthcare professionals:
World Sickle Cell Day 2017!
World Sickle Cell Awareness Day has been held annually on June 19 since 2008. This date of June 19, every year, was chosen to commemorate the day on which a resolution was officially adopted by the General Assembly of the United Nations recognizing sickle cell disease as a public health concern.
CTV News in Halifax interviewed families living with Sickle Cell Disease in Nova Scotia, along with IWK Pediatric Hematologist Dr. Victoria Price and Nurse Coordinator Gloria Gallant, and broadcast the segment on June 19th, 2017.
Watch the interview here.
Honourable Jane Cordy, along with MP Darren Fisher, both of Nova Scotia, have been instrumental in bringing forth Bill S-211 – an Act calling for a National Awareness Day: the Bill passed unanimously in May of 2017!
In Canada, we now celebrate ‘National Sickle Cell Awareness Day’ on June 19 every year.
You can read Bill S-211 in full here.
You can read more about the United Nations’ declaration here.
On World Sickle Cell Day 2016, CTV interviewed SCDANS’ President, Rugi Jalloh, about living with Sickle Cell Disease – watch her interview here.
Sickle Cell Advocacy on the Hill – September 2016
The SCDAC/AAFC held an outstandingly successful series of events on Parliament Hill, starting with a briefing session for delegates and the Annual General Meeting of the Members of the Organization.
Delegates met with Senators and Members of Parliament, including Andy Fillmore and Darren Fisher, and Senator Jane Cordy. Senator Cordy made a statement about Sickle Cell Disease, and the team was recognized by the speaker of the Senate. William Njoku, motivational speaker and former member of the Canada Men’s National Basketball Team, was also in attendance.
The SCDAC/AAFC and CanHaem joint bi-ennial conference followed the advocacy events in Ottawa. Conference planning Chair Dr. Yves Pastore and his team brought together international and national speakers to share work and advocacy accomplishments world-wide.
World Sickle Cell Day 2016!
Thank you for Joining us with Honourable Leo Glavine and IWK’s Hematology Team to Celebrate World Sickle Cell Day 2016!
National Sickle Cell Awareness Day in Canada
Over 70 people attended the event in June; politicians, hematologists, health practitioners, family members with sickle cell disease and supporters gathered to observe the day.
Ms. Jocelyn Vine, IWK VP of Patient Care and Chief Nursing Executive, Minister Leo Glavine (Health and Wellness), and MLA Stephen Gough gave remarks and discussed the tremendous progress made so far in SCD advocacy and patient care. Ms. Lanre Tunji-Ajayi, President/ED of the Sickle Cell Disease Association of Canada visited Halifax from Toronto to bring greetings from the National Association. Hematologist Dr. Victoria Price spoke about comprehensive care and transitioning from pediatric to adult care and the need for advances in this area. Dr. Price has been essential in creating a comprehensive care program at the IWK for children in the Maritimes with SCD.
Minister Glavine presented the provincial Proclamation to Ms. Rugi Jalloh, President of the Sickle Cell Disease Association of Nova Scotia, declaring June 19th as World Sickle Cell Day in Nova Scotia!
Ms. Winnell Jackson gave a heartfelt vote of thanks, and read a letter from a local family whose infant learned they had SCD through the NS Newborn Screening Program at the IWK. Through this, they were able to commence special care immediately, and be proactive and empowered in managing the disease.
Honourable senators, the United Nations, the African Union and the World Health Organization have all recognized sickle cell disease as a public health priority. They also all recognize June 19 as World Sickle Cell Awareness Day to help raise awareness of the condition worldwide.
World Sickle Cell Awareness Day has been held annually on June 19 since 2008. The day, June 19, was chosen to commemorate the day on which a resolution was officially adopted by the General Assembly of the United Nations recognizing sickle cell disease as a public health concern.
Honourable Jane Cordy: “I am pleased that our province of Nova Scotia has recognized June 19 as World Sickle Cell Day, and would like to congratulate and thank Premier McNeil and Health Minister Leo Glavine and Rugi Jalloh the President of the Sickle Cell Disease Association of Nova Scotia.”
Honourable Jane Cordy has been instrumental in bringing forth Bill S-211 – an Act calling for National Awareness Day; it was introduced in December 2015, and had made it to second reading in February 2016. If passed, this Bill will improve the profile of Sickle Cell Disease as a Canadian and pave the way to a national strategy for SCD.
New Born Screening for Sickle Cell Announcement
IWK Health Centre – April 2013