Porphyria Awareness Week April 18-25, 2020

  • Monday, April 20, 2020
Kristen

Hello, Porphyria Community,

I wanted to take a moment to share a few words with you as we launch Porphyria Awareness Week. First, I hope you are staying safe and well during this COVID-19 pandemic. From all of us at the APF, I want to let you know that our thoughts and hearts are with everyone in our community as you experience social distancing and isolation.

Today kicks off Porphyria Awareness Week 2020! Things are not business as usual and we are not able to do all the events and activities that we have seen during this week over the years. Awareness Week will go on – but will be modified considering these uncertain times.

We believe that awareness is an ongoing process – and we will continue our efforts throughout 2020.  Typically during PAW, we would see fun runs, fundraising events, awareness tables at medical centers and doctors’ offices, along with many other creative activities that you have implemented.

Though we can’t safely engage in these types of events, we can mindfully and safely share this year’s theme, #AskMeAboutPorphyria, with our communities and welcome the conversation about this group of rare diseases. 

During the week we will spotlight each of the different types of porphyria, engage on social media, encourage our community to write to their legislators, present a Facebook live session with porphyria expert, Dr. Bruce Wang of UCSF on Wednesday (7:30 pm EST), and wear purple on Friday…please send us your pictures of yourself, family, friends, and even pets!

This information is all available on the APF website, porphyriafoundation.org. There are also awareness materials for members to download and share across all the major social media platforms. Check out Porphyrias at a Glance which highlights each type. We hope you will participate in some, or all, of these events…and implement some of your own.  We are happy to support you in your efforts.

One of the things that I have admired for years about the Porphyria community is the joy that spreads when we band together. Throughout Porphyria Awareness Week 2020, our goal is not to ask of others but to share with others. By sharing, we remind our friends, family, loved ones and strangers that we are not alone. We are part of a community. Now is the time to safely engage with each other, and to teach and the learn from one another.

Our community will see us through shadow jumping, hospital trips in the middle of the night, continual presence of ports, unrelenting treatments, frustration of not having a diagnosis and the overwhelming pain of seeing one’s child or loved one suffer.

We look forward to this week and thank you, as always, for your tremendous continued support. The APF remains relentlessly focused on research, access to treatment, patient and physician education, advocacy, and supporting this wonderful community.

Please stay safe!

 Kristen?

PLEASE NOTE: The Recordati Rare Diseases (RRD) interactive click campaign, which was due to take place during Porphyria Awareness Week 2020, will be postponed until later this year In light of the COVID-19 pandemic and related economic issues. RRD supports the work of the APF and our awareness efforts. We look forward to implementing the click campaign soon.

How will you get the conversation started? Get creative and let us know how you will get involved - at a safe distance. We hope that you feel empowered to raise porphyria awareness within your communities.

Share your ideas and stories with us at: info@porphyriafoundation.org or edrinw@porphyriafoundation.org

#AskMeAboutPorphyria

Please Click Here to Access the APF Webpage for Awareness Week Logos and Material