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FAQ )

 

About the RE(ACT) Community

 

What are the main objectives of the RE(ACT) Community?

The RE(ACT) Community wants to facilitate cooperation on rare disease research worldwide and contribute to increase the delivery of new molecules and therapies for millions of patients. To accomplish this final objective, the Community has identified the following specific objectives:

 

  • Facilitate communication among researchers to improve scientific collaboration
  • Intensify communication among all stakeholders which are related to different extent to rare diseases
  • Increase information sharing and improve the access to scientific publications
  • Support the implementation of research projects through crowdfunding
  • Increase public awareness about rare diseases and the achievements and goals of research
  • Facilitate communication and exchange of information between scientists and patients

 

I am a patient and I want to meet other patients, is the RE(ACT) Community a Patient Network?

Our community is principally addressed to researchers and to patients which are actively implicated in research projects. If you want to meet patients and share your experience we suggest you to use the Eurordis' RareConnect platform. The RE(ACT) Community encourages patients to share their knowledge and experiences on treatments or to provide other scientific observations  to researchers in order to give them a better understanding of the disease and help them in finding new treatments.

 

Who supports the RE(ACT) Community? 

The RE(ACT) Community is an initiative of the BLACKSWAN Foundation. The BLACKSWAN Foundation supports the Community in collaboration with its partners (EURORDIS, E-RARE, Associations Enfance & Maladies Orphelines, Findacure). 

 

What makes the RE(ACT) Community unique?

The RE(ACT) Community supports scientific research on rare and orphan diseases worldwide. The RE(ACT) Community is an innovative online platform that combines elements of scientific knowledge sharing with the access to new funding mechanisms to improve the implementation of research projects. This approach is conceived to empower researchers and patients and change the way science is communicated. The Community offers the possibility to meet people working in rare disease research worldwide and raise funds for their projects.

 

How is the RE(ACT) Community Managed?

The RE(ACT) Community is supported by a Secretariat and a Scientific Advisory Board.

The Secretariat deals with the overall coordination and administration of the Community and it is composed by a Coordinator, a Community Manager and a Social Media Manager.

The Scientific Advisory Board (SAB) members are the same of the BLACKSWAN Foundation Scientific Committee. The SAB assures internal control of the scientific contents exchanged in the Community and is responsible for the evaluation of a project to crowdfunding in order to guarantee to the public high standards of quality for the projects supported by the Community. 

 

Sign up 

 

Who can sign up to the RE(ACT) Community?

Everyone can sign up to the RE(ACT) Community. You can sign up as Researcher, Patient, Patient representative or Supporter. Your profile to the platform will be tailored accordingly to provide you a better browsing experience. 

 

Can I sign up using a social media account?

You can sign up with Facebook, Twitter, OpenID or Google using the specific sign up button on the right of the sign up page.

 

Why do you ask for know-how and methodologies while signing up as a researcher?

This information will help researchers to identify potential mutual scientific interests and facilitate possible collaborations.

 

Donations & Crowdfunding

 

How can I support the RE(ACT) Community?

If you are interested in supporting the RE(ACT) Community financially, you can use the DONATE button on the Home Page of the RE(ACT) Community website. These donations help cover the running costs and facilitate cooperation on rare disease research worldwide. If you have any questions or if you want to support the RE(ACT) Community in another way please contact us here.

 

I have a friend affected by a rare disease, I would like to support a research project for that specific disease but no project is active on the Community website, what can I do?

If you want to support a research on a specific disease but no project is active for that disease on our website, we can help you, please contact us here.

 

Can I donate without registering?

Yes you can do it. You have the option to donate to a project or to the Community without signing up or you can sign up and donate as a Supporter, Patient or Researcher. In this way you will also receive updates on projects and information on the diseases you are interested in.

 

Can I donate with a bank wire?

If you wish to make a donation with a bank wire you can use the following bank information.

BLACKSWAN Foundation

Chemin de la Riaz 11

1418 Vuarrens, Switzerland

Bank: EFG Bank SA, Via Magatti 2, 6900 Lugano, Switzerland
SWIFT-BIC: BSILCH22
Clearing: 8465
IBAN: CH37 0846 5000 A127 414M A

 

If you are donating toward a specific project, please specify in the reference/memo field of the wire which one you would like your donation to go toward.

Please write:

the name of the specific research project that you want to support, or;

RE(ACT) Community if you want to support the Community as a whole.

 

What fees do you charge on donations?

We apply a 5% platform-processing fee on every donation to keep the site running and help cover extra costs (4% for transaction costs and 1% for running costs).

 

Are there any tax deductions for donations?

For the moment tax deductions are possible for Swiss residents only on donations above -100 Swiss Francs. 

 

What is crowdfunding? 

Crowdfunding is the practice of funding a project or venture by raising monetary contributions from a large number of people, typically via the Internet. Crowdfunding is a form of alternative finance, which has emerged outside of the traditional financial system. (Source: Wikipedia)

 

Who reviews and approves research projects? 

All research projects must pass though the screening of our Scientific Advisory Board (SAB), which determines the status of "eligible project" or reject the project application. The SAB works therefore as a “guarantor” of the quality and honesty of the researcher referent. 

 

Why it is requested a minimum amount of 15 followers on the disease page to start a crowdfunding campaign?

Once the SAB approves a project, another criterion is required to be entitled for funding: a minimum of 15 followers on the Disease page. This additional criterion prevents the dispersion of small donations through a large variety of research projects.

 

How can I monitor a project?

By accessing the Project page you can monitor the evolution of a project clicking on the submenu (“Results” and “Updates”) under the project title. 

 

How can I submit a project?

Researchers can submit projects by signing up to the RE(ACT) Community and accessing the related Disease page. Researchers need first to fill out a short form with basic information on their project and within the next 2 days they will receive an email asking them to provide additional information (see below). 

 

Which additional information should I provide to submit a project?

Once you have provided the basic information about the project (Related disease, Name of the project, Description) you will receive an email asking you to provide the following information:

  • Scientific abstract (not more than 1 page)
  • Introduction to the topic (not more than 2 pages)
  • Specific goals of the project and detailed research plan (not more than 5 pages)
  • Budget requested
  • Project’s milestones and related funding goals
  • List of other supporters/partners
  • Curriculum Vitae of the principal investigator
  • List of papers published by the applicant during the past 5 years
  • One abstract (Half a page, plain language to be presented on the website) used to present the crowdfunding project and a paragraph to introduce the investigators/group of researchers with highlights on previous achievements.

 

The information provided for the evaluation of the project will be treated with confidentiality by our Scientific Advisory Board. The promotional Abstract only will be publicly available on the RE(ACT) Community website. 

 

Is there a limit to the amount of the project’s funding goal?

There is no limit to the amount you can raise, however we highly encourage submitting projects that are looking for seed money funding. Very expensive rare diseases research projects may be difficult to fund only through crowdfunding, for this reason we recommend the submission of promising projects that thanks to the funds raised on the RE(ACT) Community can be further developed into an application to a public or private funding body.

 

Who will be able to see and support my project?

Any visitor of this website can see and support your project. 

 

Do I have to pay to start a crowdfunding campaign for my project?

It is free to start a crowdfunding campaign on the RE(ACT) Community. 

 

How can I promote my project?

Once submitted you can “Share” your project on Social Media (Facebook, Twitter, Linkedin, Google +, etc…) simply using the Share button on the project page. You can ask your colleagues and friends to do the same for even more visibility. We will also help to spread the word through our social media. Writing a clear promotional abstract which is easy to understand from the public is also important for the success of your project. 

 

When are funds credited to a project?

Funds are credited to a project when a project’s milestone has reached its funding goal in time.

 

What happens when a project doesn’t reach its funding goal?

If a milestone’s funding goal is not reached in time, a project will be considered as “expired”.

If a partially funded project expires, there are three options:
1. The project leader can ask for one extension of the deadline and the project will return “fundable”.
2. The project leader can find the remaining funds outside the Community’s platform and receive the funds collected on the Community upon presentation of a proof-of-funds or a promise of funds by a donor or institution.
3. The project leader can decide to transfer the funds collected to another active project on the same disease. 

 

Privacy

 

How are members kept safe and their personal information kept private?

The BLACKSWAN Foundation respects and protects the privacy of people who use the RE(ACT) Community website. Information about individual users is not available to any third party without first receiving your permission. By providing personal details you are consenting to its use. Such personal information will be used to identify you as a unique user, and the information will not be shared with any other entity or organization, unless you have specifically requested us to do so. The RE(ACT) Community uses cookies to help recognize you as a repeat visitor, to improve the quality of our Service, and to try and make your browsing experience meaningful.

 

What happens to the data and information shared on the RE(ACT) Community?

The BLACKSWAN Foundation owns all data and information shared on the RE(ACT) Community platform (including the information about projects and diseases). We take the responsibility for protecting your information very seriously. We use this data only for providing and improving the Service.

 

Technical

 

How can I contact other members of the community?

Researchers can send messages to each other through the RE(ACT) Community platform. For privacy reasons a Researcher cannot directly exchange with a Patient or a Supporter. To do so they have to contact the RE(ACT) Secretariat that, with their previous consent, can provide a user’s contact information. Patients and Supporters registered on the RE(ACT) Community shall also contact the RE(ACT) Secretariat if they wish to contact other users.

 

Why do I need to follow a disease?

By following one or more Diseases you receive notifications on related patients’ experiences, scientific info and new projects posted by other users on the disease page. Moreover, you contribute to unlock a disease page reaching the minimum number of 15 followers required to consider a project eligible for crowdfunding.

 

How do I follow a disease in the RE(ACT) Community?

• Please follow the steps described in this page

 

How do I, as a researcher, can submit scientific information to a disease dossier?

• Please follow the steps described in this page

 

How do I, as a patient, can submit my personal experiences with a given disease?

• Please follow the steps described in this page

 

How do I, as a research, can access to the premium contents (e.g. Molecular Syndromology Journal)

• Please follow the steps described in this page

 

Who should I contact for more information?

If you need further information, please contact us at contact@react-community.org