Hi there! I know you are a solidary person!
So, we're going to celebrate that day!🥳🎉🎉🎉🥳🥳🥳
Today is a great day, this February 28th is Rare Disease Day.
With so many things going on in the world around us, it’s very easy to put off important things like health.
That’s why the last day of February each year we mark our calendars to
bring awareness to rare diseases.
Did you know that few of these rare diseases see any sign of a cure?
The goal of Rare Disease Day is to improve knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
What are the universal challenges😓😓😠😠 faced by those living with a rare disease?
- The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis.
- The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
- Owing to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.
- Research needs to be international to ensure that experts, researchers and clinicians are connected
Rare diseases – by the numbers
300M people with rare diseases
3.5 – 5.9% of the population
72% are genetic diseases
Most of you know my story,but I want you know more about it....
What is Ataxia-telangiectasia?
Ataxia-telangiectasia (A-T) is a hereditary condition characterized by progressive neurologic problems that lead to difficulty walking and an increased risk of developing various types of cancer. Signs of A-T often develop in childhood. Children with A-T may begin staggering and appear unsteady (called ataxia) shortly after learning to walk. Most people with A-T will eventually need to use a wheelchair.
People with A-T have a normal level of intelligence, but over time, they develop slurred speech and have difficulty with writing and other tasks. Red marks called telangiectasias are caused by dilated capillaries, meaning tiny blood vessels, and may appear on the skin and eyes as people get older. People with A-T also have a weakened immune system and are prone to infections. In addition, they appear to be particularly sensitive to ionizing radiation, such as x-rays, and have an increased risk of cancer.
😭😭Yes, I know...But.....
we can help and today is the moment!!!!!!!!!!!! 💪💪💪💪👏👏
What can we do?
Spread the word🔊🔊
Share information and posts about A-T on social media and inspire friends to raise awareness for rare diseases.
Difundir información sobre la ataxia telangiectasia/ en tu entorno, compartiendo la información que publicamos desde Aefat través de redes sociales.
Muchos/as ya lo hacéis y os doy mil gracias, y muchas personas que han pasado por nuestro IES ya lo hacen:
Pedro Francisco García Aguado (exjugador de waterpolo, medalla de oro en los Juegos Olímpicos de Atlanta 1996, presentador de programas de televisión, escritor y conferenciante. Entre 2009 y 2015 presentó en el canal Cuatro los programas Hermano mayor, El campamento,...)
Los cantantes Álvaro "El Acal" y León Negro
Volunteer💪💪
Every year, thousands of events are organised around the world to mark the occasion of Rare Disease Day. Patient organizations, healthcare professionals, researchers, policymakers and other members of the rare disease community organize Rare Disease Day events.
Find events near you, or go to the websites and start your own!
-------------------------------------------------------------------------------
(SI QUIERES SER VOLUNTARIO/A de AEFAT, ESCRÍBE A secretaria@aefat.es
¿Cómo ayudarás si te haces voluntario/a?
- Como corredor de maratones solidario, empujando las sillas de nuestros niños y jóvenes afectados
- Colaboraciones en organización de eventos
- Colaborando en la inclusión de afectados y sus familias
- Crear un reto deportivo en Migranodearena.org o plataformas de recaudación de fondos.
----------------------------------------------------------------------------------------------
Tell Your Story👅👅
Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!
You can write about your story and also submit photos or a video testimonial to rarediseaseday.org
4. LET’S SHOW SOLIDARITY COLLECTING PLASTIC CAPS!♻♻
What are they for?
The plastic bottle caps are collected and then send to ARC Gestión de Residuos, a generous recycling company from Seville where they are exchanged for money and which this company donates to aefat👐👐. Those profits will go entirely to finance investigation.
Where to drop them?
In our hall you will find a container where you can drop all the plastic caps or lids you collected.
Just remember: instead of throwing them away, keep them and bring them here!
