Top Tweets for #letsTalkPorphyria
This #Porphyria Awareness Week, our employees participated in the #ShadowJumperChallenge, to better understand what it’s like to live with a rare disease that limits everyday activities, like taking a walk on a sunny day. #LetsTalkPorphyria
It’s #PorphyriaAwarenessWeek and organizations like @Porphyria_Help and @UnitedPorphAssc are working to bring awareness to porphyrias, a group of rare, often misunderstood diseases. #LetsTalkPorphyria
#DYK: We are conducting clinical research in a number of areas, including #porphyria, a group of rare diseases that affect fewer than 200,000 people in the US. #LetsTalkPorphyria #PorphyriaAwarenessWeek
Hoy es el día internacional de la #Porfiria, excelente motivo para hablar de #EnfermedadesRaras.
¡Juntos acabaremos con la porfiria!
Today is #Porphyria's international day, an excellent opportunity to talk about #rarediseases.
#HablemosDePorfiria #LetsTalkPorphyria
@CICbioGUNE
We are #AlnylamProud to share the different ways our employees around the world showed their support for the acute hepatic #porphyria (AHP) community during International Porphyria Awareness Week. #LetsTalkPorphyria
Síntomas de PORFIRIA de tipo de Cutáneo. Gran acumulación de porfirinas en la piel.
Signos: Leve, moderados o muy graves.
#hablemosdeporfiria #laPorfiriaExiste #somosAEP #porphyria #letsTalkPorphyria
Uno de los bloques más desconocidos en las #Porfirias son las Eritropoyéticas, que son:
. Porfirias Eritropoyética Congénita (PEC) o Porfiria de Günther
. Protoporfiria Eritropoyética (PPE)
Sigamos hablando de Porfiria
#hablemosdeporfiria #laPorfiriaExiste #letsTalkPorphyria
Síntomas y signos de alerta en Porfiria de tipo Agudo.
Dolor abdominal, vómitos, estreñimiento
Ansiedad, síntomas psíquicos
Neuropatía periférica, taquicardia, hipertensión, hiponatremia
#hablemosdeporfiria #laPorfiriaExiste #letsTalkPorphyria
¿Cuáles son los factores desencadenantes de las Crisis Agudas en #Porfiria?🤔
💊 Fármacos,
🍷 Alcohol
😔 Ayuno
🦠 Infecciones intercurrentes
🥵 Cambios hormonales
😡 Estrés
IMPORTANTE: ESTUDIO FAMILIAR Y CONSEJO GENÉTICO
#hablemosdeporfiria #laPorfiriaExiste #letsTalkPorphyria
During International #Porphyria Awareness Week, we worked with #patientadvocacy group leaders around the world to spread awareness of this genetic #raredisease. This is their message. #LetsTalkPorphyria
The ‘Voices of AHP’ podcast series is live! Listen to an episode during #PorphyriaAwarenessWeek to hear Sue from @BPA_Porphyria and Alicia, also living with acute hepatic #porphyria (AHP), discuss their personal experiences with this genetic #raredisease. #LetsTalkPorphyria
Semana de la concienciación de la #Porfiria.
🗓️ 10 - 17 ABRIL 2021
👉 Desde la Asociación Española de Porfiria,agradecemos a @RecordatiRareES por acompañarnos y apoyarnos desde el inicio de la AEP👈
#hablemosdeporfiria #laPorfiriaExiste #somosAEP #porphyria #letsTalkPorphyria
The Global community have been part of various awareness videos for porphyria awareness week. We’ll be sharing different ones with you each day.
The first one is about the British Porphyria Association’s efforts: www://youtu.be/WXx6nRhrqco
#LetsTalkPorphyria
En AEP llevamos más de 20 años trabajando por dar a conocer la PORFIRIA,junto a todas las personas que nos apoyan.
Únete a la AEP. Pide información.
📧[email protected]
Semana de la concienciación de la #Porfiria
#hablemosdeporfiria #laPorfiriaExiste #porphyria #letsTalkPorphyria
Sobre la Porfiria Aguda Intermitente (PAI)✍️:
- Es una enfermedad metabólica causada por un error en el tercer paso del metabolismo del hemo ➡️ déficit de la enzima PBGD⛔️.
#LetsTalkPorphyria #laPorfiriaExiste
Semana de la concienciación de la #Porfiria.
🗓️ 10 - 17 ABRIL 2021
👉 Sigamos hablando de Porfiria👈
#hablemosdeporfiria #laPorfiriaExiste #somosAEP #porphyria #letsTalkPorphyria
Its #PorphyriaAwarenessWeek, and we are proud to support the porphyria community together with our partner, @Alnylam. #LetsTalkPorphyria
As if we need an excuse to make and eat cakes... It’s Purple Food Day for #Porphyria Awareness Week 🍇 might have over done it with the food colouring 👾 @BPA_Porphyria #LetsTalkPorphyria
Semana de la concienciación de la #Porfiria.
🗓️ 10 - 17 ABRIL 2021
👉 Desde la Asociación Española de Porfiria, agradecemos a @Alnylam su apoyo para continuar estando cerca de los pacientes👈
#hablemosdeporfiria #laPorfiriaExiste #somosAEP #porphyria #letsTalkPorphyria
Hablemos de porfiria.
TIPOS DE PORFIRIAS
• Porfirias Eritropoyéticas:
Porfirias Eritropoyética Congénita (PEC) o Porfiria de Günther.
Protoporfiria Eritropoyética (PPE)
#hablemosdeporfiria #laPorfiriaExiste #somosAEP #porphyria #letsTalkPorphyria
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