Rare Anaemias International Network

📣 September is ! 📣

Patients with have abnormal haemoglobin (called haemoglobin S), which can change red blood cells into a sickle or crescent shape.

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September is !

Today, we stand with patients with blood cancer, globally! 🌍❤️

Understanding and raising awareness of blood cancers is so important. Please share this post to show your support.

Clinical trials have identified novel therapies for that alter:
- The genetic defect🧬 e.g., gene therapy
- Ineffective erythropoiesis (red blood cell production) 🩸 e.g., luspatercept
- Iron metabolism e.g., FPN inhibition

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Treatment options for have been limited for many years.

Clinical trials are research studies performed involving human volunteers. They can help to find out if a new treatment, such as a drug or gene therapy, is safe and effective.

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Treatment access barriers include:
🚗 Access to transportation
🌍 Geographical location
💰 Financial constraints
⏰ Time to receive a diagnosis

🗣️ Share this post to help raise awareness and encourage equal treatment access for people living with !

July is National !

Cord blood is blood collected from the umbilical cord and placenta after childbirth. It contains stem cells, which can be used as an alternative to bone marrow 🩸

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July is African American Bone Marrow Awareness Month!

Bone marrow transplants can offer a cure for , such as . There is an increasing need for African American donors.

Sign up to become a donor and you could help save a life! ❤️

RAIN aims to raise awareness through education and collaboration to enable equal access to basic treatment and advanced therapies, improving the lives of people living with globally🌍

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Treatments used for include:

• Blood transfusions🩸
• Bone marrow or stem cell transplants 🦴
• Erythropoiesis stimulating agents – drugs that stimulate the bone marrow to make red blood cells 💉

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Today is !

Sickle cell disorders cause round & flexible red blood cells to become a different shape. This stops them, and the oxygen they carry, from moving freely around the body and causes pain 🩸

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Sickle Cell Society UK Sickle Cell Disease Association of America, Inc.

- The 1st Patients' International Blood Alliance ( ) Meeting kicks off tomorrow, June 14, at 14:00 CEST.

Join us on 🩸to discuss the pressing challenges associated with and supply, a critical element of any healthcare system, and what can be done to improve , safety and quality in various regions across the 🗺️.

There is still time to register for this important event!
🔻https://bit.ly/3GECeUh

For more information, please visit 🔻https://thalassaemia.org.cy/news/new-event-register-now-for-the-1st-piba-members-meeting/

Reminder: World Blood Donor Day is in a week. Blood transfusions are one of the first lines of treatments for , and patients.
Please book an appointment to give blood with Canadian Blood Services or Héma-Québec .
Save a life.

- While the need for is universal, timely to and for every person who needs them is not, especially in low- and middle-income countries of the world that often face critical blood shortages.

World Blood Donor Day is observed every year on June 14 to highlight and promote the noble gesture of voluntary, unpaid , while paying special respect to all the selfless people who roll up their sleeves every day to save the lives of others.

We offer them our endless gratitude for helping keep with – and anyone who needs blood – safe and healthy! 🙏💕

Today is

Make a difference today, sign up to donate blood with your national blood donor organisation 🩸

By increasing supply, we can help to save as many lives as possible ❤️

Treatment of is usually directed towards the specific symptoms experienced by the patient and may require the coordinated efforts of a team of specialists, such as haematologists. 👩‍⚕️ 👨‍⚕️

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WORLD BLOOD DONOR DAY 2022 | Donating Blood Is An Act Of Solidarity - TIF Home/News/WORLD BLOOD DONOR DAY 2022 | Donating Blood Is An Act Of Solidarity News WORLD BLOOD DONOR DAY 2022 | Donating Blood Is An Act Of Solidarity Less than a minute World Blood Donor Day takes place on 14 June each year and was created to raise global awareness of the need for safe blood and bl...

- The most influential TIF Publication is back!

Updated Version 2.0 of the TIF Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT) - 4th Edition has now been uploaded to our website!

👉👉 https://thalassaemia.org.cy/publications/tif-publications/guidelines-for-the-management-of-transfusion-dependent-thalassaemia-4th-edition-2021-v2/ 👈👈

Hard copies are available upon request via email!
📧 For more information, please contact [email protected]

Today, Rare Anaemias International Network is supporting ! 🌍🩸

Every 27 seconds, someone is diagnosed with .

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The community invites everyone from around the world to participate in celebrating International PK Deficiency Day on 1st December, 2022. 🙌

Their goal is to raise awareness of the needs and experiences of people living with PK deficiency, their carers, and family members. ❤️

You can now vote for your favourite PK Deficiency Day logo! Find out more and vote here ➡️ https://loom.ly/ouGEVWk


Know PK Deficiency Thrive with Pyruvate Kinase Deficiency Nonprofit Organization

World Sickle Cell Day 2022 » Sickle Cell Society Sunday 19th June is World Sickle Cell Day, a United Nation’s recognised day to raise awareness of sickle cell across the world.   We would love for you to join us and help raise awareness amongst your friends and families. We have put together ideas and resources, which you can use on and around ...

- Nurses are working with exemplary commitment and dedication to save precious lives across the world.

On International Nurses Day, we offer them our gratitude for their remarkable contribution to protecting lives, keeping communities healthy, and safeguarding .

Thank you for your selfless services! 💙

To diagnose , doctors may ask about medical history, perform physical exams, and order blood and urine tests. 🔬

Diagnostic tests can include:
Complete blood count (CBC) 🩸
Reticulocyte (immature red blood cell) count
Blood smear
Levels of blood iron

Rare Anaemias International Network aims to ensure equal access to and treatment!

This we’re celebrating the incredible nurses all around the world! 🩺🌍

We’d like to say a big for all their hard work and support, particularly in helping patients with .

The Rare Anaemias International Network is delighted to share a press release which welcomes our new supporters and provides an overview of our activities in quarter 1 of 2022.

Read the press release here 📖👉 https://loom.ly/e472OqQ

Today is ! 🌍

We’re supporting Thalassaemia International Federation - TIF to improve knowledge!

Thalassaemia causes the body to produce no or too little haemoglobin, which red blood cells use to carry oxygen around the body. 🩸

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**INTERNATIONAL THALASSAEMIA DAY 2022**

is a chronic, yet treatable disorder that can be well-managed with and iron therapy.

Even nowadays, however, many countries are lagging behind in providing with the appropriate required for their condition.

Together we can change that! By raising and bringing thalassaemia and other to the forefront of the attention of policymakers, we can increase sustainable and equitable to and .

Will you join us?
https://thalassaemia.org.cy/itd2022/

Cooley's Anemia Foundation Thalassemians Welfare Organization Boond Thalassemia Foundation Society for Inherited And Severe Blood Disorders (T'dad & T'go Ltd) Aflac Cancer & Blood Disorders Center FAiTh - Fight Against Thalassemia Talasemi Derneği - Thalassemia Association of Turkey Sickle Cell & Thalassaemia Ireland Thalassemia Club ( 地中海贫血症 ) La thalassemie et la drepanocytose en algerie 地中海貧血兒童基金 Children’s Thalassaemia Foundation 台灣關懷地中海型貧血協會(Thalassemia)
Balikatang Thalassemia Help International Welfare Trust (HIWT) STAW - Society for Thalassemia Awareness & Welfare Thalassemia Erbil Abrasta - Associação Brasileira de Talassemia FIDAS FUNDACION ARGENTINA DE TALASEMIA

Rosario’s Story: A True Champion of Resilience - TIF Rosario was more than eager to recount this wonderful experience to TIF for the International Thalas

Today, Rare Anaemias International Network is supporting Fanconi Anaemia Awareness Day!

is a genetic disorder that prevents the bone marrow from making enough new blood cells for the body to work normally.

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Do you know what the symptoms of are? 🩸

Education of the symptoms is important to support early and help patients with rare anaemia receive the treatment they need as early as possible.

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