RDD - Submit your story

Rare Disease Day Story – Sign-Up Form

Thank you for being willing to share your story. Your experience helps others understand why equity matters for people living with rare diseases.

Please complete the form below and upload any photos you are comfortable sharing. You can choose how you want your name to appear, and you can tell us what you’re okay with us using (blog, social media, etc.)

YOUR DETAILS

First name

Last name

Phone

How would you like your name to appear publicly?

First Name

Initials

Full Name

Other

YOUR CONNECTION TO RARE DISEASE

How do you identify in relation to rare diseases?

Name of the rare disease (if known)

Age of the person living with the rare disease?

Your Story

Your journey so far

What does “equity” mean in your story?

Day-to-day life

Hope and strength

What would you like others to understand about rare diseases?

If your story had a headline, what would it be?

PHOTOS & MEDIA

Please upload 1–5 photos / videos that you are comfortable for us to use.

Upload your file

Choose a file or drag and drop one here.

Is there anything we should not show or mention?

HOW WE MAY USE YOUR STORY

Where are you comfortable for us to use your story and photos?

RDSA website and blog

RDSA social media (Facebook, Instagram, LinkedIn, etc.)

Printed materials (reports, brochures, posters)

Presentations, talks or events

Media / press (newspapers, radio, TV, online news) if requested

I’m not sure yet – please contact me to discuss

Would you be willing to be contacted for:

A short follow-up interview (phone/online)

Possible media opportunities around Rare Disease Day

Speaking at an event or webinar (optional)

No, I prefer not to do interviews or public speaking

CONSENT & MEDIA RELEASE

By submitting this form, I confirm that:

The information I have provided is true to the best of my knowledge.

I am at least 18 years old, and I am submitting my own story OR I have the permission of the adult whose story I am sharing.

give Rare Diseases South Africa NPC (“RDSA”) permission to use my written story, quotes from my story, and any photos or media I choose to upload for the purposes of:

• Raising awareness about rare diseases and equity

• Advocacy and education

• Fundraising and reporting on RDSA’s work

I understand that my story and photos may be used on RDSA’s:

• Website and blog

• Social media platforms

• Printed materials (such as brochures, reports and posters)

• Presentations, events and campaigns

• Media and press engagements where RDSA is involved, only if I have ticked that I am comfortable with this above.

I understand that RDSA may lightly edit my story for clarity, length, and language, but will not change the meaning of what I have shared.

I confirm that the photos and media I upload either belong to me or I have permission to share them, and that RDSA may use them as set out above.

I understand that once my story or images are published, they may be shared or reshared by others (e.g. on social media), and RDSA cannot fully control this.

I may contact RDSA at any time to request that my story or photos are not used in future materials. I understand that RDSA may not be able to remove content that has already been printed, shared, or used in past campaigns.

If at any point I become uncomfortable, I understand that I can email assist@rarediseases.co.za to discuss my concerns and possible removal from future use.

I have read and understood the Consent & Media Release and I agree.