Share Your Rare Disease Story

Date

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Preferred Email

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Preferred Phone

Phone

Preferred Address

Gender

Race/Ethnicity

Birth Year (example: 1985)

Name of the rare disease/s you are affiliated with (please use medical name, if known).

Tell us how rare disease has impacted you and/or your friend/family member.

Have you or your friend/family member had a difficult time getting a diagnosis? Please share the story of your rare disease diagnostic odyssey.

How long did it take to receive a diagnosis or are you still seeking? Describe how many doctor visits you have endured. What has been the emotional and financial impact to tha patient and family/caregiver(s)?

Have you or your friend/family member had a difficult time getting a diagnosis? If so, tell us about that experience.

Were you or your friend/family member/patient diagnosed by newborn screening? If so, tell us about that experience.

If you or your friend/family member has received a diagnosis, what has changed since you received an answer?

Has the diagnosis improved treatment options?

Is there an FDA-approved therapy specifically for your rare disease?

Do you take off-label medication to treat your rare disease? (i.e., drugs that have been approved by the FDA to treat a disease different from your disease)

Have you had challenges gaining access to therapies for your rare disease (drugs, devices or other products) that are recommended by your physician? Tell us about these challenges (for example, complicated approval processes/denial of coverage/burdensome out of pocket costs).

Have you faced barriers to care? If so, tell us about these barriers (for example, travel/linguistic/lack of specialist/economic)

Have you faced discrimination since receiving your diagnosis? If so, tell us about that experience (employment/access to care, insurance coverage, clinical trials, etc.)

How has the COVID-19 pandemic affected how you manage your rare disease or access healthcare related to your rare disease?

Are you aware of promising treatments for your rare disease that are currently being studied in clinical trials?

Have you participated in a clinical trial and/or patient registry? If so, tell us about that experience.

Is there an issue that is important to you for your rare disease? This can be about policies, accessibility, or just general changes that you would like to see in the rare disease community.

Have you participated in the RARE Foundation's programs and events? If so, tell us about your experience and the impact that becoming an advocate has had on you.

Do you have photos or video that illustrate your rare disease journey?

Drop files here or

Max. file size: 50 MB.

Some ideas: Photos or video may depict your everyday life, how you manage your rare disease, the challenges you have experienced, and/or your engagement in advocacy. Videos should be under 2 minutes. Accepted file types: jpg, jpeg, png, mov, mp4. Max. file size: 50MB.

I hereby authorize the RARE Foundation to republish the material I am submitting to the Story Bank (Story Bank Submission) and also to interview, photograph, film, and/or audiotape me, and to use the Story Bank Submission and any photographs, video, audio and interview information (hereafter, collectively “Materials”) in any of its materials, including but not limited to publications, presentations, Web sites, social media, advertising, which the RARE Foundation determines advances its goals.

I also authorize the RARE Foundation to provide the Materials to other organizations, federal or state officials, media organizations and any other individual or organization which RARE Foundation believes is acting to advance its goals.

If the RARE Foundation wishes that I participate in an event or a one-on-one interview, the RARE Foundation may contact me for permission and scheduling, but I am under no obligation to participate in such opportunity.

I further understand and agree that I have no rights in the Materials, and that these Materials may be edited, used, published, distributed, republished and/or licensed by RARE Foundation, now or at any time in the future, for the purposes set forth in above. I waive all right to inspect or approve the use of the Materials, now or in the future.

I understand and agree that I will receive no monetary compensation for my participation or for the use of these Materials.

I release and discharge any and all actions or claims which I, my family members, or my heirs may have against the RARE Foundation, its officers, Trustees, employees, contractors and/or agents, and any other third party contracting with the RARE Foundation, arising for any reason whatsoever from any use, publication, distribution, or republication of these Materials in accordance with this Consent and Release at any time now or in the future. I agree to defend, indemnify, and hold harmless the RARE Foundation, and its employees, directors, officers, contractors, professional advisors, assignees and agents, from and against any and all claims, demands, expenses, losses or liabilities including, without limitation, reasonable attorney’s fees arising out of or in connection with any breach, or alleged breach, of the terms of this Agreement.