Wereldwijd prioriteiten vastgesteld om zorg te verbeteren voor patiënten met FD/MAS
vrijdag 15 juli 2022
To the researchers and clinicians of the International Consortium for FD/MAS:
Patient groups from around the globe, including FD/MAS Alliance, Patiëntenvereniging Fibreuze Dysplasie, ASOCIACIÓN DE DISPLASIA FIBROSA – ADF, Fibrous Dysplasia Support Society UK, EAMAS, FD/MAS Brasil, and GULI (FD/MAS) Care Center in China have collectively identified nine priorities for improving FD/MAS care. Over the past two years, through community polls and monthly discussion and revision, we developed this consensus. We share the ICFDMAS’s interest in creating multi-stakeholder, collaborative, and patient-centric progress in FD/MAS treatment and ask that all future initiatives focus in whole or in part on one or more of these priorities.
Priorities of the International FD/MAS patient groups:
- Pain treatment and different types of pain
- Doctors should broadly understand that people with FD/MAS have pain and that there are many different types and sources of pain associated with FD/MAS.
- Addressing pain should be a clinical research priority, including recognizing and addressing “red flag” pain.
- While some research has been published affirming that FD/MAS does cause pain, additional research and publications should be encouraged.
- Cooperation between departments and hospitals, locally and across the world
- Encouraging one appointment with the whole care team. The more often you can bring together doctors to discuss decisions, the better answers become.
- Encouraging communication between colleagues and experts (i.e., if a doctor from Spain has doubts about a care plan, he could contact a doctor from the USA, Italy, etc., to confer).
- Communication with patients (clarity about which tests are ordered and why etc.)
- Continued promotion of the FD/MAS Treatment Guidelines
- Clarifying formalized breaks from the protocol for patients with less severe disease burden
- Advising patients to ask in writing for any decision that does NOT go with the recommendations or ignores their concerns.
- Educating doctors
- Encouraging experts to present and speak about FD/MAS within their professional networks and with medical programs and including patient stories in these presentations
- Using resources like UpToDate to place more accurate, current information on FD/MAS in popular resources
- Providing opportunities for mentorships and fellowships that would encourage early career providers to understand FD/MAS
- Psychological support
- Encouraging research on how and when patients receive psychosocial support in order to understand what areas need more support (understanding diagnosis, school and work life, coping with pain, changes in mobility or appearance, etc.).
- Promoting more referrals and more expert training on psychological aspects of FD/MAS
- Ensuring that medical teams and counsels have a psychosocial specialist represented
- Creating spaces for community members to connect*
- Easier path to diagnosis
- Educating doctors, especially primary care teams and craniofacial doctors
- Continued research on bone tumors so that doctors can differentiate between diseases
- Improve and advance research
- Biobanking and encouraging biosample collection could make a significant difference in research advances. Institutions collaborate to advance this.
- Coordinating with other diseases with similar comorbidities
- Easy to share explanations for children, teachers, etc.*
- Encourage values such as respect, equality, and empathy
- Seek funding for further videos and written material targeting both young children and teens.
- Elevate newer research centers and clinicians
- The consortium should make space for researchers who are new to this group to present their work and share their progress.
This priority list represents areas of concern and hopes for improved care shared by all FD/MAS patient groups. It is our belief that our shared challenges can lead to shared triumphs. The more these priorities are talked about between institutions and organizations, the more likely we are to find opportunities for connection and collaboration. We welcome the chance to join that discussion and advance the understanding and treatment of FD/MAS.
* Denotes an initiative of the patient advocates
About FD/MAS Alliance: The Fibrous Dysplasia Foundation (FDF) dba FD/MAS Alliance is a community-led 501(c)3 nonprofit that fights back against fibrous dysplasia and McCune-Albright syndrome (FD/MAS) based in the United States serves people affected by FD/MAS through programs of research, education, and advocacy.
Over Patiëntenvereniging Fibreuze Dysplasie Een 100% vrijwilligersorganisatie voor en door patiënten. Wij staan voor belangenbehartiging, informatievoorziening en lotgenotencontact voor patiënten met Fibreuze Dysplasie en McCune Albright Syndroom, en hun naasten. Dit uit zich in:
Het vergroten van de kennis bij patiënt en zorgverlener, het bevorderen van een snelle en juiste diagnose van de ziekte, het bevorderen van onderzoek naar Fibreuze Dysplasie en McCune-Albright Syndroom en het onder de aandacht brengen van deze zeldzame ziekte in het algemeen.
Sobre la Asociación de Displasia Fibrosa (ADF).La ADF es una entidad sin ánimo de lucro que congrega a afectados, familiares y personas sensibilizadas con la Displasia Fibrosa y Síndrome de McCune-Albright. Nuestra misión es promover actuaciones para mejorar la vida de los pacientes y sus cuidadores. Fomentamos la figura del “Paciente Experto” cuyo objetivo es el conocimiento de su propia enfermedad. Promovemos actividades para la divulgación de información válida y rigurosa sobre la DFMAS. Trabajamos en la creación de una red de expertos profesionales en DFMAS. Lanzamos campañas para dar visibilidad a la enfermedad y concienciar a la sociedad sobre la enfermedad. Impulsamos la investigación científica. Establecemos vínculos de coordinación con otras entidades tanto nacionales como internacionales que permitan la actuación conjunta para la mejora de la calidad de vida de los pacientes con DFMAS.
About Fibrous Dysplasia Support Society UK (FDSSUK) The Fibrous Dysplasia Support Society (FDSS) exists to provide information and support by sharing our knowledge and experience of the condition with those who would like to know more. To encourage, promote and assist a better understanding of Fibrous Dysplasia (including its associated conditions) and its possible treatments among patients and their carers. To promote increased awareness of the condition amongst medical professionals. To actively encourage people with the condition to meet others affected and to share their experiences. FDSSUK have a medical advisory board that provides advice for individuals with FD/MAS.
Sobre a Associação de Displasia Fibrosa e McCune Albright Brasil (FD/MAS BRASIL) - Um Grupo dedicado ao apoio aos portadores e familiares da Síndrome de McCune Albright e Displasia Fibrosa Óssea, somos uma entidade de direito privado, beneficente, com fins não econômicos. A Associação tem como objetivo fomentar estudos e pesquisas sobre a Síndrome McCune-Albright e Displasia Fibrosa Óssea, oferecer serviços gratuitos e permanentes para pessoas de baixa renda ou beneficiárias de programas governamentais, sempre provendo informações de qualidade para as famílias e pacientes de todo o Brasil.
European Association for McCune- Albright Syndrome (EAMAS) European Association for Mc Cune-Albright Syndrome – Fibrous Dysplasia (EAMAS). L’Associazione, senza scopo di lucro, è impegnata nel divulgare ed organizzare le informazioni in merito alla condizione clinica in modo che possano essere utili alla comunità scientifica, per l’assistenza dei pazienti e dei loro famigliari. L’Associazione promuove la ricerca scientifica e fornisce supporto ed assistenza ai pazienti ed alle loro famiglie.
GULI (FD/MAS) Care Center in China: for more detail, please visit the web version of this letter.
Fibrous Dysplasia/McCune-Albright syndrome Australia, the purpose of FDMAS is to raise awareness, and improve support & care pathways for people living with Fibrous Dysplasia & McCune Albright Syndrome in Australia.
Foreningen Fibrøs dysplasi / McCune-Albright syndrom Norge er en pasient- og brukerorganisasjon for alle med FD eller MAS i Norge. Vi tilbyr likepersonsstøtte og har samarbeid med andre organisasjoner innenfor området sjeldne skjelettdysplasier, og samarbeider med Sunnaas/TRS som kompetansesenter.