Photos from the 4th annual @tif_thalassaemia parent & patient association conference! Comment if you see any familiar faces here in this #CAFThrowback!
关于我们
Statement of Purpose The Cooley's Anemia Foundation is dedicated to serving people afflicted with various forms of thalassemia, most notably the major form of this genetic blood disease, Cooley's anemia/thalassemia major. Mission Our mission is advancing the treatment and cure for this fatal blood disease, enhancing the quality of life of patients and educating the medical profession, trait carriers and the public about Cooley's anemia/thalassemia major.
- 网站
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https://www.thalassemia.org
Cooley's Anemia Foundation的外部链接
- 所属行业
- 非营利组织管理
- 规模
- 2-10 人
- 类型
- 非营利机构
- 创立
- 1954
地点
Cooley's Anemia Foundation员工
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Maria Hadjidemetriou
Rare Disease Speaker and Patient Advocate for Cooley’s Anemia (Thalassaemia)
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Philip Rutigliano,
Connector | Consultant | Serial Entrepreneur | Mentor | Thought Leader
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Steve Hemraj, MPA
Patient experience is paramount to linkage and retention in healthcare
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Shobana Navaneethabalakrishnan
Postdoctoral Researcher
动态
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CAF's Staten Island Chapter invites you to come bowl in order to raise awareness for Thalassemia on Saturday, April 6 at Rab's Country Lanes! Tickets are available to purchase here at https://lnkd.in/eWJdThNm. Join us for a fun evening of bowling with pizza and great company. Hope to see you all striking out thalassemia with us!!
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WELCOME BACK CARE WALKERS!!! Register today at the following link: https://lnkd.in/eC2S4wvF Care Walk is the Cooley's Anemia Foundation's annual fundraising event and opportunity to bring together the Thalassemia community and its supporters around the country. Funds raised support medical research to fight Thalassemia, a genetic blood disorder, as well as patient support services for Thalassemia patients across the country! The official date of Care Walk this year is May 4 to commemorate World Thalassemia Day! However, you have the option to host your Care Walk anytime during the year. Pick any location that works for you and hold your Care Walk on that date. You must register before April 20th to receive your Care Walk T-Shirts!! This year's theme is Walk for Your Warrior. This year we want to honor all individuals with Thalassemia, some of the toughest warriors in the world. We encourage all participants to name one person, past and present, that they are honoring with their walk. Each person who registers could also shout out their warrior on social media through videos or pictures with the hashtag: #CAFWalkForWarrior.
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#InternationalThalassaemiaDay - On #8May, landmarks and monuments across the globe will shine bright red in solidarity with those living with #Thalassaemia – and we need YOU to be part of this powerful movement! Last year, thanks to the incredible dedication of volunteers worldwide, a staggering 78 iconic buildings were illuminated in red, spreading a message of #Hope, #Resilience, and #Unity. But we’re not stopping there… For 2025, we are aiming even higher – more landmarks, greater awareness, and stronger support for the thalassaemia community. Let’s make #BringThalToLight the biggest and brightest yet! Together, we can shine a light on #ThalassaemiaCare and work towards a future where no one fights alone. Stay tuned for exciting updates via the official ITD2025 page: ?? https://lnkd.in/dKuHtHyX ?? Let’s turn the world red for thalassaemia! ?? #ITD2025 #BringThalToLight #WeAre1 #PatientsFirst #Thalassemia #Awareness
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Please take some time to watch this great conversation with The Red Cell Revolution today on #RareDiseaseDay featuring our National President Ralph Colasanti ??
On #RareDiseaseDay (February 28) at 12:00 p.m. ET, #ShowYourStripes and join us for a #LinkedIn event highlighting the power of collaboration in the rare hemolytic anemia space. This special event will feature the ‘Red Cell Revolution’, a multi-stakeholder advocacy and advisory council representing the Sickle Cell Disease, Thalassemia, and Pyruvate Kinase (PK) Deficiency communities – founded and funded by Agios. Mark your calendars! Don’t miss an engaging conversation with an expert panel of physicians and patient advocates as they share insights and strategies for advancing co-creation and innovative evidence generation. Let’s come together to drive change, raise awareness, and show our stripes for the rare disease community. ?? Sign up here. #PatientAdvocacy
Building Connections Across The Rare Hemolytic Anemia Community
www.dhirubhai.net
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Today is #RareDiseaseDay and we put together this video that explains exactly what Thalassemia is. Today we honor the many battling Thalassemia, those that are still with us and those that are sadly no longer here ?? Thalassemia is a condition that needs warriors like you, donors ??? ? Whether you donate money or donate blood, a small gesture can make a BIG difference in someone’s life. Help our organization help the lives of many thalassemia warriors ???
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?? New Thal Pals Episode Alert! ?? The latest episode of “Thal Pals: The Alpha Beta Revolution” is here! Join patient advocate NinaMaria and special guest Dr. Sujit Sheth as they explore the critical importance of building a dedicated care team for patients with thalassemia. Dr. Sheth shares his inspiring journey and insights on how a strong, well-rounded care team can make all the difference in managing this lifelong condition. Listen to the episode here: https://bit.ly/42W82RD This podcast is not intended as medical advice. Please consult your healthcare team with any treatment-related questions.
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We are proud to announce that our National President Ralph Colasanti will be speaking at this event. Please tune in ??
On #RareDiseaseDay (February 28) at 12:00 p.m. ET, #ShowYourStripes and join us for a #LinkedIn event highlighting the power of collaboration in the rare hemolytic anemia space. This special event will feature the ‘Red Cell Revolution’, a multi-stakeholder advocacy and advisory council representing the Sickle Cell Disease, Thalassemia, and Pyruvate Kinase (PK) Deficiency communities – founded and funded by Agios. Mark your calendars! Don’t miss an engaging conversation with an expert panel of physicians and patient advocates as they share insights and strategies for advancing co-creation and innovative evidence generation. Let’s come together to drive change, raise awareness, and show our stripes for the rare disease community. ?? Sign up here. #PatientAdvocacy
Building Connections Across The Rare Hemolytic Anemia Community
www.dhirubhai.net