The Kith Collective

01/27/2022

Today's the day! Join the EveryLife Foundation for Rare Diseases webinar at 1 PM ET.

On January 27th at 1pm ET, the EveryLife Foundation, in partnership with Biotechnology Innovation Organization - BIO , the National Health Council, and PhRMA, will introduce a transformational resource, the “Guide to Patient Involvement in Rare Disease Therapy Development.”

Join us for this special webinar to learn more about this new resource and how it can further embolden your engagement with partners within the therapy development ecosystem. This landmark tool was developed by nearly 100 community leaders over the past year during the PFDD Rare Disease Compendium Roundtables, a series of four virtual workshops that considered the application of FDA Guidances across four lifecycle stages of medical product development.

Register today: https://bit.ly/3HSHItS

01/25/2022

We are incredibly proud to share this new resource - the Guide to Patient Involvement in Rare Disease Therapy Development. Download the Guide and learn more: https://bit.ly/3qVRJAK.

Together with leadership from the EveryLife Foundation for Rare Diseases and in partnership with Biotechnology Innovation Organization - BIO, National Health Council, and PhRMA, we developed this over the past year+ with over 100 community leaders.

Filled with action steps and relevant resources, the Guide is designed for you, whether you are a patient advocacy organization, industry partner, payer, or another critical player in rare disease medical product development.

12/03/2021

Click here to take our survey: https://www.research.net/r/surgicaloptions.

This survey is open to women living in the U.S., ages 18 and older, who have been diagnosed with stage I, II or III breast cancer in the past 5 years. This survey is also open to women at high risk for breast cancer who have had or are planning to undergo a prophylactic mastectomy. All information submitted will be aggregated and de-identified. Survey respondents may be invited to participate in additional opportunities to inform research.

Your experience can help inform the surgical options other women might have.

09/24/2021

Loved working with EveryLife Foundation for Rare Diseases and such an inspiring group of advocacy leaders and subject matter experts to develop these tools and share case studies like this one from the Dravet Syndrome Foundation!

The youngest of Mary Anne's three children, Elliot, has Dravet syndrome, a rare catastrophic form of epilepsy that begins in the first year of life. One of the challenges she recognized was the manner in which Dravet syndrome was coded in health information systems. "This made it more difficult to secure coverage for indicated medicines and medical testing to address all healthcare needs of a person with Dravet syndrome”, says Mary Anne.

The EveryLife Foundation in collaboration with dozens of rare disease patient advocacy community partners has created an ICD Code Roadmap. The Roadmap is a first-of-its-kind resource designed to help patient advocacy leaders and their partners understand, evaluate their role, and navigate the process of refining the diagnostic coding system in the U.S.

To read Mary Anne's full story and share the ICD Code Roadmap and accompanying tools, visit https://everylifefoundation.org/icd-code-roadmap/

The ICD Code Roadmap was made possible with the support of The Kith Collective and through unrestricted educational grants provided to the EveryLife Foundation by Alexion Pharmaceuticals and Sarepta Therapeutics

09/21/2021

One week ago, September 14, the cerebrotendinous xanthomatosis or CTX community of affected patients, parents, spouses, siblings, and children had the opportunity to raise their collective voice to improve understanding and spur better care and treatment. The Kith Collective was honored to work with the United Leukodystrophy Foundation and the wonderful CTX community members on this landmark patient-focused drug development meeting with the FDA. The recording is now live, and community members can still share written comments to be included in the voice of the patient report: https://ctxresource.org/unlockctx/

10/24/2018

Today at the Milken Institute Future of Health Summit, Melissa Stevens, executive director of the Institute’s Center for Strategic Philanthropy, will highlight interim results from the Supporting Wellness survey of people living with depression and bipolar. It has attracted more than 5,600 responses so far.

The Kith Collective facilitated a user-centered design approach to the project, engaging a group of peer volunteers to shape survey questions, the format, its length, and the means for distributing it. Their input helped us identify sensitive language and other elements that could have dampened response.

The Kith Collective also identified the Depression & Bipolar Support Alliance (DBSA) as a partner for the project. DBSA will use the data and learnings from the survey at its externally led “Well Beyond Blue” patient-focused medical product development meeting, coming up on November 16. The Kith Collective is providing communications support for this meeting as well.

This morning, STAT News reports on some of the early survey findings:

The new survey is part of a growing trend in the mental health field to listen to people and find out what they want scientists to study.

09/14/2018

So far 4,368 people affected by depression and/or bipolar have shared wrenching accounts of challenges they experience and their hopes for wellness and research aligned with their priorities. We are proud to be working with the Milken Institute Center for Strategic Philanthropy and the Depression and Bipolar Support Alliance to bring forward the voices of people with lived experience. For a summary of interim results, please visit: https://prn.to/2QxRecf To take the survey, click here: https://lnkd.in/gKHFy6M

09/13/2018

Over the past 7 months, the Kith Collective is thrilled to have worked with the American Sleep Apnea Association to shape and deliver its AWAKE initiative, including the first-ever Patient-Focused Medical Product meeting and a Patient & Caregiver Survey that attracted 5,630 responses. The 88-page comprehensive report is available now, charting a course for more patient-centered innovation and care! Read the report: https://bit.ly/2x9JO6O and the press release: https://prn.to/2p2vpoi

08/02/2018

We have been part of a unique collaboration between the Depression & Bipolar Support Alliance and the Milken Institute Center for Strategic Philanthropy to develop the first-ever peer-designed survey to elevate the lived experience of people with depression and bipolar. The survey launched on August 1, 2018 and has attracted more than 700 responses in the first 24 hours. If you, or someone you care about, experience depression or bipolar, please share your perspective via this anonymous survey. https://www.research.net/r/supportingwellness

07/29/2018

Parent Project Muscular Dystrophy was our very first client and we had the honor of writing the report on their patient-focused drug development "Compass" meeting. It was a great privilege to work alongside founder Pat Furlong, Annie Kennedy, Ryan Fisher, and members of the Duchenne community on this project. The report is now available online:https://www.parentprojectmd.org/wp-content/uploads/2018/07/PPMD_Compass_Meeting_Report.pdf

06/07/2018

Tomorrow, the AWAKE Sleep Apnea meeting -- the first patient-focused medical product development meeting -- will take place in College Park, Maryland. Staff from the FDA's Center for Devices and Radiological Health and Center for Drug Evaluation and Research will hear from hundreds of patients about what it's like to live with sleep apnea and barriers they face in getting effective treatment. They'll also learn from results of a survey that has so far attracted more than 5,000 responses. Join us by webcast or complete the survey. More details at: https://www.awakesleepapnea.org/

The Kith Collective is proud to have been part of this effort from the beginning!