Our members/donors support our work!
In 2024, 225 people joined/donated and received a tax receipt (66% of the donation is tax deductible).
AMARAPE needs the loyalty of its members/donors to ensure its continued operation and support for research. We encourage donations through various methods in order to develop our activities.
1 Volunteer commitment
AMARAPE volunteers bring the association to life with their remarkable commitment.
Three objectives have been implemented to better recognize and value them:
- encourage their training with the Alliance Maladies Rares (listening, support, public speaking, fundraising, research, spring listening sessions, etc.): 8 volunteers participated in at least one training activity in 2024.
- Establish procedures for reimbursing their expenses with the possibility of tax-deductible donations
- Promote their commitment by testing the use of the Bénévalibre software.
Beyond the work shared within the board of directors (7 videoconference meetings and 1 face-to-face meeting in 2024), AMARAPE also needs to better coordinate its actions between volunteers. The gradual establishment of committees around the main missions (listening, communication, research, fundraising) has been initiated and will be developed in 2025 with the empowerment of each individual.
Recruiting new volunteers is also one of our concerns.
In 2024, 225 people joined/donated and received a tax receipt (66% of the donation is tax deductible) for a total of €38,571 in donations.
AMARAPE needs the loyalty of its members/donors to guarantee its operation and support for research. The collection of donations in various ways is to be encouraged in order to develop our actions.
2 The evolution of communication
In 2024, the website evolved to provide an improved presentation of our association:
– Who we are: Our team, the scientific council with photos of each member
– Supporting you: contacting us, informing you, listening to you, helping each other
– Supporting us: joining/donating, use of donations, getting involved, my donor account
– Home page: answers to frequently asked questions with links to resources
– Option to subscribe to our newsletter from the website: 5 newsletters in 2024!
– Information on rare diseases has been updated with the support of the scientific advisory board.
– Other developments: several pages have been translated into English and the “testimonials” section has been diversified (caregivers and volunteers) and enriched with videos (our YouTube channel).
Testimonials, the most visited section of the site, are invaluable, so please feel free to contribute!
New documents have been printed and will be distributed, particularly in RENAPE centers: flyers in English, updated flyers, and posters.
At the end of 2024, an Instagram account was created with the aim of improving our visibility. The coordination of various publications on social media has improved this communication.
Follow us on various social media platforms: Linkedin, X, Facebook et Instagram !
3 Strengthening relationships with professionals
Working alongside professionals and showcasing our work
With the support of its volunteers, AMARAPE has participated in several forums organized in healthcare institutions, including the Lorraine Cancer Institute and the Hospices Civils de Lyon.
AMARAPE was invited to present the patient partnership set up in the digestive surgery department at the Partenariat Expérience Patient en Santé (Patient Experience Partnership in Healthcare) conference (project awarded in 2023), the RENAPE conference (Lyon, January 19, 2024), and the ONCO AURA conference (Clermont-Ferrand, March 12, 2024). Véronique, a peer supporter, also spoke at a nursing school and is involved in research.
Attending meetings with professionals to learn, train, and introduce ourselves
Volunteers were invited to participate in some of the work of the caregiver training days in Paris dedicated to the management of peritoneal carcinomatosis.
The organization of the international congress on peritoneal diseases in Lyon (PSOGI-ISSPP) in September 2024 was a wonderful opportunity to present our association, meet other patient associations, and attend a scientific presentation of remarkable quality.
Communication in English was set up: website pages, roll-ups, and flyers.
Supporting research
Following its presentation at the 2024 AGM, patients were asked to contribute to Dr. TrĂ©court’s ongoing study. In addition, a scholarship was awarded to a sociology student interning at the Lyon Sud department.
The association’s scientific council was formed and asked for its opinion on various topics: medical information, research, requests for second opinions.
The exceptional award of the first prize for peritoneal diseases, worth €10,000, the “Christelle Kieffer Research Prize,” was made possible thanks to the efforts of her loved ones since 2023.
As in 2023, a joint call for projects with the Rare Diseases Foundation, worth €30,000, was launched to support research into peritoneal diseases.
In order to encourage donations and with the support of its scientific council, AMARAPE is committed to better communicating past and ongoing research to the general public.
4 Organizing support for patients and their loved ones
This support is one of our priorities and takes different forms to best meet the needs of patients and their loved ones.
We have three objectives: to support, inform, and guide.
In 2024, the “Supporting you” section of the website explains how to contact our volunteers (patients trained in listening skills or professionals) by email or phone. The figures show the quantitative importance of these contacts: 194 contacts, 108 hours of telephone conversations, with an average duration of 33 minutes per contact. The active listening service offered is also qualitative and supports callers at different stages of their care journey.
Other forms of support are offered to members: closed support groups in person or remotely (two groups benefited from 12 meetings of two hours each in 2024);
In 2025, one-off support groups on various topics, with or without a facilitator, will be organized and open to all members upon registration. Facebook groups for specific diseases are also being considered.
Since October 2022, VĂ©ronique has been working in the digestive and oncological surgery department in southern Lyon as part of the Patient Experience in Health Partnership (27 days in 2024). The results have been very positive for patients, relatives, professionals, and the peer supporter, and have led to other projects.
Several peer support projects are underway in other RENAPE centers with volunteers currently in training.
In order to work as a team to deal with difficult and impactful situations for listeners, a listening committee has been created. It is organized and led by VĂ©ronique. Various agreements formalize these partnership and support actions for research and listening.
Gradually, new listeners will be trained and integrated into this team of volunteers.
Patricia PICHON President of AMARAPE
Financial report
Some additional details:
Online donation management fees:
The €330 management fees represent approximately 2% of the €17,500 paid online (credit card or PayPal) on the AMARAPE website. Donations by check or bank transfer do not incur any fees.
➔ In order to limit donation-related costs, online donations by credit card are preferred, and for donations over €500, bank transfers.
Bank and insurance fees:
current account at La Banque Postale + MAIF association insurance.
Communication and website maintenance fees:
telephone subscription for listening, €1,500 for flyers and posters + €2,900 for website maintenance and modification
Use of voluntary contributions in kind:
travel and accommodation expenses for members (PSOGI) in the form of donations to the association.
Use of benefits obtained without compensation from volunteers:
(low!) estimate of hours worked by board members over the year: 343 hours x $12/hour = $4,116
Christian MONTET Treasurer, AMARAPE