Check out what the international community got up to during Porphyria Awareness Week in 2021 and 2022!

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  • #MyPorphyria

    Share your story - tell people about your porphyria... 

    How are you affected?

    What would you tell other people?

    What do doctors/text books say and what is it really like for you?

  • #PurpleForPorphyria

    Show your colours by wearing purple to raise awareness of porphyria

  • #GPD2023

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    #MyPorphyria

    #PurpleForPorphyria

    #GPD2023

    #Porphyria



Accurate Information Statement

 

This statement has been produced by GPAC with the support of patient advocacy organisations from around the world and with approval from international clinical and research networks

 

The global porphyria community is aware of potentially dangerous information being circulated across social media platforms and on various websites regarding the diagnosis, management, and treatment of the porphyrias. Unfortunately, some of the information is inaccurate, misquoted or taken out of context. Such information could be medically dangerous if taken as advice or guidance without input from a porphyria expert or qualified healthcare professional.

 

If you have concerns about your care, testing or general porphyria management, please connect with a recognised porphyria specialist/expert centre or your national porphyria patient organisation. These organisations will be best equipped to guide you toward appropriate testing and safe management/treatment for your porphyria.



Read the full Statement HERE

CORONAVIRUS (COVID-19) GUIDANCE

THE SITUATION

Around the world, people are understandably concerned about the current outbreak of the Coronavirus disease (COVID-19). The situation is constantly changing and each country is managing the pandemic slightly differently. 

The World Health Organisation provides a good and reliable source of information on the disease and ways to reduce its spread: https://www.who.int/emergencies/diseases/novel-coronavirus-2019 

GPAC recommend that you follow the guidance provided by your own country’s Government and healthcare system with regards to travel/movement restrictions, and testing and management protocols for COVID-19.


#staysafeandwell

CORONAVIRUS AND PORPHYRIA

Porphyria doctors have indicated that those with porphyria are not thought to be at any greater risk of catching COVID-19 than those without porphyria. However, for those with an acute porphyria it may be that the virus could trigger an acute porphyria attack as is the case when patients with porphyria have other severe illnesses such as flu. Similarly, people with other health conditions are being advised that they may be worse affected if they contract COVID-19, but the information on this is still emerging.

#staysafeandwell

ADVICE for the porphyria community

1. Follow the Government’s advice on travel, reducing social contact, self-isolating, etc.


2. Follow the advice of the doctors providing porphyria care:


a. It may be that telephone consultations are provided, or non-urgent appointments are postponed. 


3. For patients receiving regular treatments of Haem arginate, Panhematin, Givosiran:


a. The doctor/nurse/treatment centre will hopefully be making arrangements to ensure that treatment continues promptly and in a safe manner (whether this is at home, at a treatment centre or at a hospital).


b. But, if there is concern about accessing treatment or travelling for patients, encourage the patients to contact their treatment nurse/centre to discuss whether any arrangements need to be changed to ensure treatments continue safely.


c. It is advised that patients exhibiting a cough, a high temperature and/or shortness of breath advise their nurse/treatment centre before face-to-face contact, in case alternative arrangements need to be made to ensure that care continues in a safe manner for all concerned.


#staysafeandwell

IF PORPHYRIA PATIENTS THINK THEY HAVE COVID-19:

1. Follow the Government’s advice regarding testing/managing COVID-19.


2. Follow the advice of the porphyria doctor/nurse for any additional guidance.


3. Recommend that patients have access to their Emergency Protocols/Plans as well as information on Safe Drugs which should be taken with them if they go to hospital. 

Not all of this advice will be relevant to you – but GPAC is aware that we are all facing challenging and unpredictable times. It is completely understandable to be worried about the impact coronavirus may have on our porphyria communities – we hope that you will all try to strengthen your social media channels as means to stay in touch with others with porphyria. 


#staystrong

FINALLY

we urge you all to follow the official advice from your local Government and hope you all stay safe and well.


Sue Burrell 

GPAC President


#staysafeandwell

"Let's create added value by working together with no competition"

Not only we will work together and tell everybody where they have to go to with their questions if it is for a GP, a doctor or an other patient. But also we work together with all types of Porphyria because there are similar in some ways. Like the psychology. But the differences helps us along the way. If you can and want to help, please let the board know that. It doesn't have to be a big thing. But for instance if you do Marketing for your work, and you see that this can be doen better. Or you're a webmaster who want to help, pleas let us know. Also is important that we will translate the pages to different nations, we need help to correct what Google translate has made for us.
PLEASE CONTACT US !

WHO WE ARE

The Global Porphyria Advocacy Coalition (GPAC) operates as an umbrella organization for national porphyria patient advocacy organizations, representing all types of porphyria. This organization will establish and maintain a global network that seeks to support all individuals impacted by porphyria and to safeguard their interests. 
The porphyrias are a group of rare and ultra-rare diseases that impact individuals in every single country worldwide. Many countries have patient advocacy groups that have organized to promote research, awareness, education, and support of in-country patients. These groups foster access to diagnosis, management and treatment for patients impacted by porphyria. The role of national organizations is paramount for the advancement of the interests of porphyria patients, particularly given the complexities and variables between countries. There are many countries that do not have support organizations to provide access to these basic needs. While there are many porphyria organizations throughout the world, there is no central source for information, which results in a significant discrepancy of resources and diminished continuity in the characterization of disease. The result is a lack of consistency and unity when engaging in key areas of awareness and advocacy. The GPAC brings together national organizations when necessary, offers in-country support when requested, leverages international advocacy expertise, and has the opportunity to link an international physician network. The GPAC will support and complement national organizations. This effort will provide a strong unified voice representing the interests of all porphyria patients worldwide.
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ADRESS

Address:  136 Devonshire Road, DH1 2BL, Durham City
Mail:          sue.burrell@gpac-porphyria.org
Phone:      00 44 300 30 200 30
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SAY HELLO

Later on you will read more about our organisation.
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