Events


Phacilitate Webinar

THE EVOLUTION OF PATIENT VOICE AND ENGAGEMENT THROUGHOUT THE JOURNEY TO COMMERCIALISATION

Date: 11th February 2021 Time: 4.00pm GMT  |  11.00am EST  |  8.00am  PST

HOW INDUSTRY, BIOTECHS AND PATIENTS CAN WORK TOGETHER TO STREAMLINE THE ROAD TO COMMERCIALISATION

In the rush to the clinic and in the hustle of running collections, manufacturing and logistics operations, the voice of patients can often be reduced to numbers, data and results, and seem distant from the day-to day running of a clinical-stage biotech.

However, patient voice has a pivotal role in the regulators’ decision in the marketing authorisation application, and it is a missed opportunity for any biotech not to engage with patients to the maximum level throughout their commercialisation process.

In this webinar, our panel of experts will discuss how industry, biotechs and patients can best work together to streamline the road to commercialisation.   


Innovation in Rare Disease: Making Progress with Cell & Gene Therapies

When Tue, Feb 23, 9:00 am to Thu, Feb 25, 10:15 am

This Rare Disease Day, Syneos Health continues the drive to raise awareness of rare diseases and their impact on patients’ lives – and to shine a light on the opportunities for cell and gene therapies in treating these disorders.

Join us for an inspiring program that brings together – over three days – patients and their families, legislators, industry experts, advocates and sponsors for presentations and panel discussions on education initiatives, recent advancements and the future promise of cell and gene medicine, and current patient experiences with these therapies.

View the Agenda for Each Day: Day One | Day Two | Day Three

Register for the Event

Additional Details – Check Out Our Latest Rare Disease Thought Leadership on Our Insights Hub: Click Here


WHEN
February 22 – March 5, 2021 (Virtual Congressional meetings on March 3rd and 4th)
WHAT
Virtual meetings with your Senators and Representative AND virtual advocacy events. Rare Disease Legislative Advocates (RDLA) organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. Meetings will take place virtually on March 3rd and 4th. The RDLA team also helps to prepare advocates for their meetings, provides legislative resource materials, and hosts pre-meeting training webinars.
SCHEDULE OF VIRTUAL EVENTS

Week 1: RARE Readiness
Monday, 2/22: Selfie Monday—Post a picture on social media and tag #RareAcrossAmerica
Wednesday, 2/24: Fast Forward for RARE Practice Your Pitch Webinar
Thursday, 2/25: Virtual Rare Disease Caucus Briefing
Friday, 2/26: Share Your Rare Story—Take a video and post on social media and tag #RareAcrossAmerica 

Week 2: RARE Rally
Monday, 3/1: NIH Virtual Event 
Tuesday, 3/2: Prepare for Your Virtual Hill Meetings (One pagers and resources at www.RareAcrossAmerica.org)
Wednesday, 3/3: Virtual Hill Meetings with Senators (12-5 pm ET)
Thursday, 3/4: Virtual Hill Meetings with Representatives (12-5 pm ET) No prior experience necessary. Registration for this event and all RDLA events are free for rare disease advocates. More information at www.RareAcrossAmerica.org.

SAVE THE DATE: The Rare Across America training webinar will take place on February 4th at 2:00 pm ET, First Time Advocates Webinar on February 9th at 2:00 pm ET, and the Team Leaders Webinar on February 11th at 2 pm ET.
REGISTER
 
For more information, visit www.RareAcrossAmerica.org or contact RDLA Program Coordinator, Katelyn Laws, at klaws@everylifefoundation.org.

2020 Newborn Screening Awareness Month

Throughout the month of September, Baby’s First Test, a program ofExpecting Health, will continue our annual tradition of sharing newborn screening facts, videos, and stories on our social media platforms as well as highlighting education and awareness efforts from communities and organizations across the nation.

Our #2020NBS toolkit has messaging guidance for this year’s theme Expect Newborn Screening to help you raise awareness about the test that every parent can expect with sample social media messages, shareable graphics, and tips on how to share your story.

When you share a post, picture, or story, use #2020NBS to be part of our larger awareness campaign and to join the national dialogue! Together, we can amplify family stories and raise awareness for newborn screening.

Download our #2020NBS Toolkit here. 

Share Your Story

Newborn Screening Awareness Month is a time to tell your story, to raise awareness, and to make a difference! Throughout the month, Baby’s First Test will be sharing stories and photos from families and individuals about their personal experiences with newborn screening.

Submit your newborn screening story on our Family Experiences page. 

Other ways to share your story:

Use Facebook Live or Instagram Live to tell your story or share what your day-to-day looks like.

Post a photo and share your story in the caption.

Include #2020NBS in your all of your Instagram, Facebook, or Twitter posts.

Storytelling Tips: 

Include the basics. Who, what, when, and why.

Be authentic. Everyone’s experience may be different; tell your truth.

Use images or video. Photography is one of the simplest and most powerful ways to tell a story.

Choose one story to tell. Focus on your main goal for telling your story. People only remember a few things at once, so remove any unnecessary details.

Keep it short and sweet. Aim for 250 words or less.

Include a call-to-action. What’s the goal for telling your story? To raise awareness? To advocate? Make sure to end your story with a call-to-action.

Sample Social Media Posts 

Use these sample social media messages by copying it, sharing, and/or adding your own photo! 

September is Newborn Screening Awareness Month! #Newbornscreening is important because it gave my child a healthy start #2020NBS

My child is 1 of 12,500 newborn born each year who is given a 2nd chance because of #newbornscreening! #2020NBS

Learn from other families, in their own words, what their #newbornscreening journey has been like: https://expectinghealth.info/3gTKjH6 #2020NBS

I’m proud to be part of the #newbornscreening community because every family can expect newborn screening and every baby deserves a healthy start! #2020NBS

I am proud to be part of the #newbornscreening community because I (insert reason, activity, or profession)! #2020NBS

What’s your #newbornscreening story? Share yours today to make a difference and remind other families they are not alone! https://expectinghealth.info/3gTKjH6 #2020NBS

September is Newborn Screening Awareness Month! To learn more about #newbornscreening and what to expect, visit BabysFirstTest.org. #2020NBS

Did you know there are three parts to #newbornscreening? 1) the blood test (or heel stick) 2) the hearing screen 3) pulse oximetry. Learn more about what to expect from your baby’s first test: https://expectinghealth.info/3fRp6vU #2020NBS

Looking for educational resources on #newbornscreening? Check out @BabysFirstTest’s resource center: https://expectinghealth.info/3izu9mD #2020NBS

Each year, about 12,500 babies are born with one of the conditions included in state #newbornscreening panels: https://expectinghealth.info/3gOlkEP #2020NBS

Did you know that not every state screens for the same #newbornscreening conditions. Find out what your state screens for: https://expectinghealth.info/3fI5ESg #2020NBS

It’s been a hard year filled with uncertainty. But babies are born every day and #newbornscreening continues to happen! Learn more about the basics of newborn screening: http://expectinghealth.info/31HA41Z #2020NBS

#Newbornscreening is an essential #publichealth service that screens babies for serious but treatable medical conditions. Learn more here: http://expectinghealth.info/31HA41Z #2020NBS

As we navigate changing policies and new #COVID19 information, it’s more important than ever to raise awareness for #newbornscreening, a life-saving service that every family can expect! #2020NBS

If you’re an expectant parent, you may be overwhelmed with information! With the added stress of the #COVID19 pandemic, there’s even more going on. Get started by learning about your baby’s first test: http://expectinghealth.info/31HA41Z #2020NBS

Social Media Graphics to Share

Raise Awareness on Facebook 

Add the #2020NBS Frame to your profile picture
1. Update your profile picture
2. Click add frame
3. Search for #2020NBS
4. Reposition your profile picture accordingly
5. Determine how long the frame will be displayed

Educational Resources to Share

Looking for educational resources to share on newborn screening? We have lots of wonderful English and Spanish resources from our team and organizations across the country in our newborn screening resource center, including:

Videos

Webinars

Fact Sheets

Educational Tools

Posters

Join the Conversation – #2020NBS Twitter Chat on September 17 at 2pm ET 

Awareness Month Activities from Our Partners

How are you raising awareness about newborn screening? To let others know what you are doing throughout the month, email jloey@expectinghealth.org