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4p- Support Group

We are thrilled to share that John Mauro, one of Engage Health’s Rare Disease Difference Makers®, has been honored with a “Lifetime Achievement Award” from the National Ataxia Foundation! This well-deserved recognition celebrates John's exceptional contributions to the rare disease community. Congratulations, John, and thank you for your dedication!

Do you know someone who has made a significant impact on groups and individual patients/families affected by rare diseases? Nominate them as a Rare Disease Difference Maker® https://tinyurl.com/ytam2s66

Send a message to learn more

The NNPDF Family Support & Medical Conference agenda is now available. It will be in Salt Lake City, UT on July 11-13, 2024.

It's not too late to register if you haven't yet: https://www.nnpdfconf.org/register

National Niemann-Pick Disease Foundation, Inc. Niemann-Pick Disease Awareness Nnpdf Staff

Scholarship Fund is accepting applications!

Apply by April 22, 2024 here: https://everylifefoundation.org/rare-scholarship/

EveryLife Foundation for Rare Diseases

Join us at the MDA conference this week and meet Skyler Jackson, our Senior Director of Qualitative Research! Visit poster to learn about our research conducted in collaboration with the Jett Foundation, focusing on 'Moving from patient voice to patient-centric outcomes in Duchenne muscular dystrophy'. To schedule a direct meeting with Skyler, please reach out to her at [email protected] or call 651-994-0510.

RSVP here: http://tinyurl.com/e8c3mm7t
KrabbeConnect

March 1st marks the beginning of National Colorectal Cancer Awareness Month.

Dress in Blue to show your support!

Colorectal Cancer Alliance

Scan the QR Code to participate or click here: http://tinyurl.com/e8c3mm7t

KrabbeConnect

Skyler Jackson, our Senior Director of Qualitative Research will be at the MDA conference in Orlando, FL from March 3rd-6th to present "Moving from patient voice to patient-centric outcomes in Duchenne muscular dystrophy".

Please stop by to learn more about this exciting research, or to schedule a time directly with Skyler, reach out to her at [email protected] or call 651-994-0510.

We look forward to seeing you there!

Muscular Dystrophy Association

February 29 is , marking the rarest day of the year!

At Engage Health, Inc., we're passionate about supporting the 30 million people worldwide affected by rare diseases.

Join us in taking action:
1. Spread the word by sharing this post and using the hashtag .
2. Attend one of the events planned in our home state of Minnesota.
MN Rare Advocacy Day, March 5: http://tinyurl.com/m5fuz4ey
MN Rare Disease Day, March 7: http://tinyurl.com/37n9x3zp

Every action counts in making a meaningful impact. Together, let's stand with those living with rare diseases.

National Organization for Rare Disorders, Inc. (NORD)

MSRGN's Last Genetics Pop-Up is on February 22, 2024. The topic they are exploring is HOPE through Support. Invite your friends and family to register with you.

Register here: http://tinyurl.com/32nwcwz5 Mountain States Regional Genetics Network

Join us in honoring on February 29th!

We're proud to share our Rare Disease Difference Maker® poster featuring inspiring individuals like Anne Rugari and Reena Kartha. Their stories are just a glimpse of the incredible impact individuals can make in the rare disease community.

Help us continue to recognize and raise awareness by nominating someone who has made a difference in the rare disease community. Your nomination could shine a spotlight on someone deserving of recognition! Click here: http://tinyurl.com/ytam2s66

Skyler presenting her poster at WORLDSymposia

We can't wait to reconnect with all our friends! Reach out by emailing Anne at [email protected] or calling the office at 651-994-0510. WORLDSymposia

The Engage Health team, including President and CEO Patti Engel, Senior Director of Qualitative Research Skyler Jackson, and Senior Consultant Anne Melchior, will participate and present research. Reach out if you will be attending and connect with our team by emailing Anne at [email protected] or calling the office at 651-994-0510. We look forward to connecting with you soon!

Holiday Greetings

We are Thankful for all of you!

Happy Thanksgiving! 🦃

Starting today, Jett Foundation is accepting applications for the Accessible Vehicle Fund and will be open until December 15th, 2023.

Get more info here: https://jettfoundation.org/giving-fund/

Shout out to National Niemann-Pick Disease Foundation, Inc. to raise awareness this month.

-Pick

We are so honored to be able to share our research with the Jett Foundation and connect with other rare disease advocates at the National Organization for Rare Disorders, Inc. (NORD) Summit!

In early September, we had the opportunity, along with the Rosenau Family Research Foundation, to sponsor the KrabbeConnect Million Dreams Gala.

It was an honor to be in the presence of leaders in the lysosomal and leukodystrophy disease space, fellows in the medical community, influential industry partners, friends of the foundation, the dedicated leadership and staff of KrabbeConnect, and most importantly, families impacted by Krabbe disease!

Kartha
Orchard
Letcher
Curtin

Newborn Screening Bootcamp Registration is Open!

The bootcamp, co-hosted by the EveryLife Foundation for Rare Diseases and Expecting Health will provide attendees with the opportunity to learn about and discuss developments in newborn screening with experts and patient advocates.

Register here: https://everylifefoundation.org/newborn-screening-take-action/newborn-screening-bootcamp/registration/

NewbornScreen A Healthy beginning. March of Dimes

The Alport Syndrome Foundation of USA has applications available for the 2023 Paul Silver Enrichment Award which provides funding for young people affected by Alport syndrome to reach their goals. If you are in the US and between ages 18-24 with an Alport syndrome diagnosis apply today. The deadline is October 27th.

Download application:https://alportsyndrome.org/wp-content/uploads/2023/07/2023-Paul-Silver-Enrichment-Award-Application.pdf

Pharmacy Benefit Managers (PBMs) manage prescription drug benefits for health insurance firms. Click here to learn more from BioNJ about how the way they work impacts you.

Read here: https://bionj.org/infographic-the-impact-of-pbm-practices-on-patients/

EveryLife Foundation for Rare Diseases

"Twelve Numbers That Will Change Lives" describes the work of doctors Joshua Bonkowsky and Monika Baker in getting ICD-10 codes for twelve different leukodystrophies. This astonishing feat with help researchers and clinicians better understand these conditions and spur therapeutic development.

Read it here: https://uofuhealth.utah.edu/newsroom/news/2023/09/twelve-numbers-will-change-lives

Cure LBSL University of Utah HealthKrabbeConnect Hunter's Hope Foundation National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)

Engage Health's President & CEO, Patti Engel, is at Global Genes RARE Advocacy Summit and will be presenting today at 3pm PT! We can't wait!

To learn more about the RARE Advocacy Summit: https://go.globalgenes.org/share-ras

We look forward to connecting with you!

Engage Health's President & CEO, Patti Engel, is at Global Genes RARE Advocacy Summit and will be presenting Wednesday, September 20th at 3pm PT!

To learn more about the RARE Advocacy Summit: https://go.globalgenes.org/share-ras

We look forward to connecting with you!

Global Genes RARE Advocacy Summit is taking place September 19-21 in San Diego and will bring together one of the largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies.

Get ready to connect, learn and inspire!

Learn more here: https://go.globalgenes.org/share-ras

Even in the year 2023, getting a diagnosis of a rare disease can feel scary and overwhelming. Now imagine getting the same diagnosis in 2005. Facebook was in its infancy and many of the other social media sites didn’t even exist. Practically no one used “Google” as a verb, as in “You should Google your rare disease to find out more!”

Read more about our latest Rare Disease Difference Maker®, John Mauro here: https://www.engagehealth.com/rare-disease-difference-maker/john-mauro/