Earlier this year, the RareConnect team actively participated in a crowdfunding campaign led by the Spanish Association of Ectodermal Dysplasia and a father with two children affected by this rare disease.
The importance of crowdfunding campaigns for rare diseases has become apparent. They are a good opportunity to help in the financing of a research project.
Ectodermal dysplasia is a rare disease that affects 1/5,000- 10,000 new-borns, and for which there is no specific treatment. Basically, Ectodermal dysplasia affects ectodermal structures or derivatives; skin, teeth, hair, nails, eyes, throat, nose… There are more than 200 types.
The following presentation shows our experiences and the conclusions drawn after taking part in the campaign.
Ignasi, Spanish father of two children affected by ectodermal dysplasia, was selected to run the Barcelona Marathon 2015 with the support of a major Spanish radio station. Ignasi decided to take advantage of the visibility that the Barcelona Marathon would give, and the support of the radio station, to increase awareness on this rare disease and raise funds for a research project being carried out in Spain.
The Spanish Ectodermal Dysplasia association and Ignasi, focused on contacting families and anyone who might be interested in donating money to the campaign. The RareConnect team was responsible for communication via social networks, pictures and promotional videos.
Our experience has allowed us to see that those directly affected by the disease are the largest contributors. Patients and their families identify with the cause and are the first ones interested in the campaign’s success.
Our target was 14.800€ – we achieved this very soon as both Ignasi and the Spanish Ectodermal Dysplasia Association did a very good job contacting and encouraging their contacts to donate. This was a key factor.
Our top 10 recommendations:
– Choosing a platform that suits our needs
– Thinking about the (feasible) aim carefully
– Illustrating the campaign with a short video that summarises the campaign. Adding subtitles if possible.
– Having numerous photos, of good quality, to use on social networks.
– Having the campaign translated into various languages if possible.
– Collecting money before publically launching the campaign, in order for the counter not to start at 0.
– Sending personalised emails: to the media, contacts, family, friends, other contacts affected by the rare disease.
– Periodically posting updates on the campaign on social networks.
– Sending a personalised thank you email to all donors.
– Finding a cause to justify the campaign (marathon, financing of a clinical study…)
If you have any questions about crowdfunding, you can ask them in the crowdfunding discussion group. This discussion group is used to share experiences, examples of successful campaigns or share the contact details of individuals who can guide you.