#RareSuperPowers: Rare disease advocates - created a PSD social media storm

Thursday, 14 December 2017

Inspired by this year’s theme of patient empowerment through knowledge, Ataxia & Me, the Portuguese Association for Congenital Disorders of Glycosylation (APCDG) and others decided to launch a challenge to a group of patients, patient associations and artists : “What if all of us united and created a social media campaign for #PSD2017, unlike anything that’s been done before?”.

Eleonora Passeri, social media and neuroscience consultant provided guidance and vision to this campaign, as “Beauty will save the world, let’s spread and share awareness on socials!”

And, it didn’t take much convincing, as everyone was aware of the power of solidarity, of union, and of “being in this Together!”

However, we could have never predicted the scale of the events that unfolded. Everyone joined this #RareSuperPowers group: tweets and posts flooded social media channels. All of us became empowered #sidekicks of this awareness campaign.

The sidekicks of this campaign included Italian artist, Michela Parroni with her Arte Atelier MP, Silvia Rosati and the Museo Diocesano of Assisi (Perugia), the writer Bruno Mohorovich, the businesses Foodie and Restaurant Redibis of Arianna Calzolari and Hakam Buti, the Fashion Dog Tolettatura of Miriam Aldofri, together with Finestre di Assisi/Windows of Assisi and Universal Mankind Facebook pages, individual patients, patient associations (Ataxia and me, 22q11Ireland, Action for MdDS UK) and an international patient-centered research network (CDG & Allies -PPAIN).

"The Rare disease community is like a Global, Extended Family" added Alan Thomas, founder of the patient association ataxia and me and active advocate for ataxia and rare diseases. “As I say "We are all in this Together" and this statement is so true of the rare disease community and during #PSD2017 you could see this camaraderie, showing through on a global scale.” affirmed Mr. Thomas.

Artists dedicated beautiful art pieces to this celebration, even a dish was made to honour this day. We shared pictures of what we were doing to mark the day, #pinksocks joined the movement, and we even made an adaptable image, so that everyone could share their support individually, but at the same time referring to our joint campaign!

“Of course that together we are better and #strongertogether” said Anne Lawlor, president of the patient association 22q11Ireland.

“Days like PSD are so important. As an undiagnosed family it is something we can be included in where we normally can't, because we don't have a label." declared Emmy Kelly a mummy blogger, who advocates for rare diseases.

Each one of us appealed to their own community, followers and friends, not only by emphasizing their individual needs, but rather by focusing on the common needs, the common struggles, the common benefits.

“I hope that next year we can even gather a larger group of individuals and patient organizations to collaborate. My appeal to you out there is - Next year, share your super powers with us!” said Rita Francisco, volunteer patient advocate at APCDG and a researcher at CDG & Allies-PPAIN.