On May 5, in a show of global solidarity and philanthropy, people will be participating in #GivingTuesdayNow to help support charities that do so much for our society. People who live with eosinophil-associated disease and their loved ones feel the impact of these conditions each day. Please consider supporting our community on May 5 by getting involved in the following ways:

• Welcome new members to our community. Join our online community on the Inspire network and give or receive support. Share APFED’s posts on social media platforms such as Facebook, Twitter, and Instagram so that others know resources exist for them! Our social media links are at the bottom of this page.
• Tell your story. Your experiences can help those diagnosed with eosinophil-associated diseases, as well as those who are unfamiliar with these conditions, have a better understanding of what it’s like to live with these conditions. Patient perspective videos or written contributions are highlighted on a variety of platforms to increase awareness. Learn more and submit content for consideration.
• Support APFED while you shop. If you use Amazon.com, designate APFED as a charity recipient through AmazonSmile, and Amazon will donate to APFED at no cost to you. Looking for ways to help rare awareness of eosinophil disease? APFED’s Gift Store has lots of options, and your purchases help support APFED.
• Support a cause you care about. If you are able to make a donation to APFED to support programs and services, please consider doing so. You may direct your gift to initiatives that are important to you, such as research, education, or advocacy.

Eos Connection Online Support Community: There’s an App for That!

Learn and Connect with Others Anywhere, Anytime!

We’re excited to share the availability of a new mobile app for our Eos Connection online support community on Inspire! The app provides an even better experience so that you can connect with others who understand first-hand the challenges of eosinophil-associated disease.  Download on your app-friendly device at Inspire.com/app.

The rare disease patient community will come together in unity to celebrate Rare Disease Day on February 29, 2020 (leap year, which is the rarest day of all)! This special day is focused on raising awareness among the general public and decision-makers about rare diseases and their impact on peoples’ lives.

• Visit the U.S. Rare Disease Day website to learn how to get involved and download resources at us. For global activities, visit  rarediseaseday.org.
• “Show Your Stripes” with APFED’s Rare Disease Day Facebook Frame in honor of this year’s event theme and to raise awareness of eosinophil-associated disease!
• Participate in a special Rare Disease Day event at the National Institutes of Health in Bethesda, Maryland on February 28, 2020, from 8:30 a.m. to 4:30 p.m. This free event will feature speakers and panelists discussing topics such as personalized medicine, shortening the journey to diagnosis, and NIH clinical trial resources, and much more. Get complete details and to register to attend onsite or participate via webcast. APFED is excited and honored to have been a part of the planning committee for this special event!

This year, in support of #GivingTuesday on December 3, 2019, Facebook is matching up to $7 million in donations made on Facebook to eligible US-based 501(c)(3) nonprofits.

Facebook’s match for GivingTuesday 2019 begins at 8:00 AM Eastern Time (5:00 AM Pacific Time) on Tuesday, December 3, 2019.

• Donations are matched dollar for dollar on a first-come, first-served basis until $7,000,000 USD in eligible donations are made on Facebook.
• Any US-based 501(c)(3) nonprofit eligible to receive donations on Facebook can be matched.
• Facebook will match up to a total of $100,000 per nonprofit organization.
• Each donor can have up to $20,000 in eligible donations matched on GivingTuesday.
• Facebook covers processing fees so that when you donate using Facebook’s payments platform to a nonprofit organization, 100% of your donation goes to support the cause you care about.

How Can You Help APFED?
All #Giving Tuesday funds raised for APFED on Facebook will go toward our Give the Gift of HOPE campaign, which will help fund APFED’s Hope on the Horizon Research Program, as well as vital support, education, and advocacy initiatives!

• Make a Facebook Donation and Encourage Others to Do the Same. All donations to APFED’s Facebook on December 3rd could be matched! Mark your calendar, set your alarm, and make your donation early on December 3rd. Matching starts at 8:00 AM EST!
• Host a Facebook Fundraiser on Behalf of APFED! Visit fb.com/fund/APFED/ to get started. Share your fundraiser with your friends and family and ask them to donate and share your #GivingTuesday fundraiser. Don’t forget to share your fundraiser early on #GivingTuesday to maximize those matching dollars!

Don’t miss out on this incredible fundraising opportunity to double your donation and fundraise to help those living with eosinophil-associated diseases (EADs).

More About Facebook Fundraisers
Nonprofit fundraisers let you, our APFED supporters, raise money quickly and easily on Facebook. You can set up a dedicated page here to share why you support APFED, while also raising awareness of EADs.

Whether you’ve volunteered, donated, or you have a personal story to share, tell your friends and family why finding a cure for eosinophil-associated disease is important to you.

Your friends and family can donate in a few clicks without leaving Facebook, making it easier for you to collect donations and reach your fundraising goal.

Learn more ways to give on APFED’s Give the Gift of HOPE campaign page. And don’t forget to mark Tuesday, December 3rd on your calendar for #GivingTuesday!

APFED was honored to receive a scholarship to attend the 2019 NORD Rare Diseases and Orphan Products Breakthrough Summit that was recently held in Washington, D.C. The two-day conference enabled attendees to engage with leaders on key issues of importance to the rare disease community.

Sessions included but were not limited to topics specific on patient-focused drug development, gene therapy, drug pricing, patient registries, social media platforms, and how emerging technology can advance rare disease. The agenda featured speakers from the FDA, NIH, patient advocacy groups, industry, and academia.

Several rare disease research posters were displayed and exhibitors engaged with attendees throughout the meeting. The Summit also provided the means for patient advocates to connect and offer support to one another and to share information.

“It was an inspiring meeting and the speakers brought so much to the table,” said APFED Executive Director Mary Jo Strobel, who attended the event. “Some of my key takeaways from the Summit are that stakeholders are keeping what is best for the patient top-of-mind, and that patient voice and perspective, as well as collaboration with patient advocacy groups, are critical to advance diagnostics and treatments.”

You may read more about the Summit in this post-event wrap-up from NORD,

The 2020 NORD Summit is scheduled to take place next October 8-9 at the Marriott Wardman Park in Washington, DC.